Y O R KHealth Economics

C O N S O R T I U M

University of York, Market Square, Vanbrugh Way, Heslington, York YO10 5NHTel: 01904 433620 Fax: 01904 433628 Email: yhec@york.ac.uk http://www.yhec.co.uk

York Health Economics Consortium is a Limited CompanyRegistered in England and Wales No. 4144762 Registered office as above.

Y O R KHealth Economics

C O N S O R T I U M

DEPARTMENT OF HEALTH

Cross Border Healthcare and Patient Mobility: Data and Evidence Gathering

Final Report

KARIN LOWSON, Project Director, YHECJAMES MAHON, Senior Associate ConsultantDIANNE WRIGHT, Research AssistantPAULA LOWSON, Associate ConsultantSOPHI TATLOCK, Research AssistantSTEVEN DUFFY, Research Consultant AUGUST 2010

YHEC

University of York, Market Square, Vanbrugh Way, Heslington, York YO10 5NHTel: 01904 433620 Fax: 01904 433628 Email: yhec@york.ac.uk http://www.yhec.co.uk

York Health Economics Consortium is a Limited CompanyRegistered in England and Wales No. 4144762 Registered office as above.

ContentsPage No.

Executive Summary

Acknowledgements

Section 1: Introduction 11.1 Background to Study 11.2 Processes For Receipt of Health Care Abroad 11.3 Planned Healthcare 31.4 Current Evidence of Mobility 41.5 The Study 41.6 The Study Report 5

Section 2: Literature review 72.1 Introduction and Methodology 72.2 Policy and Legal issues 82.3 Data on Cross Border Healthcare in the EU 92.4 Patient Choice 102.5 Planned Healthcare Initiatives 112.6 Medical Tourism 12

Section 3: Collection of Data on Patients Receiving Planned Treatment Abroad Funded by the NHS 143.1 Introduction 143.2 Analysis of E112 Data 153.3 Findings For E112 Analysis 153.4 Analysis of EHIC Claims 193.5 Analysis of Article 56 Data 19

Section 4: Analysis of the Public Survey 204.1 Methodology 204.2 FIndings 234.3 Summary and discussion 304.4 Comparison of Survey Findings with Flashbarometer Findings 33

Section 5: Focus Groups with members of the general public 355.1 Introduction 365.2 Process for Recruitment and Management 365.3 Analysis of Participants 375.4 Topics for Discussion 395.5 Findings 40

Section 6: Survey of NHS Commissioners 496.1 Introduction 506.2 Analysis of Responses 516.3 Analysis of Data on Patients Who Have Received Treatment Abroad in Mainland Europe 55

Section 7: Case studies of NHS 597.1 Introduction 607.2 Patient Numbers 607.3 Information, Knowledge and Advice 61

7.4 Processes For Considering Planned Treatment Abroad 627.5 Barriers To Funding Patients Abroad 647.6 Northern Ireland 67

Section 8: Mystery Shopping with NHS Commissioners 698.1 Introduction 708.2 Methodology 708.3 Findings 71

Section 9: Survey of Professional Organisations and Patient Associations 759.1 Introduction 759.2 Analysis of Responses 76

Section 10: Conclusions and Recommendations 7910.1 Demand 8010.2 Processes 81

Bibliography

Appendices:Appendix A Detailed Costs of E112s

Executive Summary1. INTRODUCTION In July, 2008, the European Commission (EC) published a draft Directive on the application of patients' rights in cross-border healthcare, which sought to codify existing ECJ case law on patients' rights and clarify their application. This issue had previously been subject to public consultation by the EC to which the Department of Health (DH) had responded.

The Department of Health (DH) commissioned a targeted research and information gathering study to collect information on public and patient knowledge, attitudes and preferences with regard to the proposed EU Cross-Border Healthcare Directive (EUCBHD), and on patient mobility issues in general. The study had two broad objectives: To develop an understanding of the public’s and/or patients’ responses to the

Directive, including an assessment of the likely numbers choosing to travel; To assess the state of NHS readiness, including a review of current processes and

numbers being managed.

Activities undertaken to address these objectives comprised the collection of data from the Department for Work and Pensions (DWP); a large survey and focus groups with members of the public; a survey of, case studies with and mystery shopping of NHS commissioners; and a survey of professional organisations and patient associations. The whole study was underpinned by a literature review and stakeholder interviews It is also believed that patients are increasingly confident about their rights, options and entitlements about their NHS healthcare. Following a number of high profie legal rulings in Europe, many of these rights and entitlements now extend to healthcare accessed in other European countries, as confirmed in the NHS Constitution. Part of the research study investigated how widely people were of their rights in respect of cross border healthcare.

2. UNDERSTANDING PUBLIC AND PATIENTS’ ATTITUDESAccording to the public survey, 62% stated they would consider seeking planned healthcare abroad in the future with 50% citing avoidance of long waiting lists as the main advantages to going abroad. These findings are reinforced by the findings from the focus groups, where waiting times were a driver to seek healthcare abroad. Disadvantages cited included not having family nearby, not being to speak the language and the costs of travelling.

While we cannot provide strong evidence on the scale of any future demand for planned treatment in the EU, the evidence found does suggest that there is a willingness to consider going abroad in a majority of the population – although many indicated they did not know where to go for information if they were considering overseas treatment.

3. ASSESSMENT OF LIKELY NUMBERS CHOOSING TO TRAVELTo the year ending 13 November 2009 there were 747 E112s issued by the DWP. 108 of these were non-maternity relating to 64 patients, 47 of whom were British. We estimate the costs of these 108 E112s to be no more than £1.1million or £17,000 per E112. As there were low numbers of E112s issued, it can be deduced that the majority of PCTs did not agree to fund planned healthcare abroad using an E112 in the 12 months analysed.

i

Taking evidence from the survey, the lack of translation of potential into current demand for overseas treatment could be that supply of healthcare in the UK meets current demand and so people do not need to go overseas. However, given the change in emphasis away from targets around waiting times, increases in waiting times or size of waiting lists may lead to an imbalance in supply and demand and more patients may seek treatment abroad. The new Directive may also increase the demand for overseas treatment amongst people with no intrinsic barrier to treatment outside the UK, perhaps for routine treatment such as dentistry although we found no evidence of this.

Consistent messages from across all EU countries are that whilst many might consider travelling outside their country to receive healthcare, neither our survey, nor the EU survey, suggest that this consideration will necessarily be translated into demand or that the numbers are likely to increase under current supply of healthcare, such as the management of waiting lists. This may change in the future.

4. ASSESSMENT OF NHS READINESSThere is limited evidence that preparations are being made for the introduction of the new directive and strong evidence that many local commissioners are not even aware that a new directive is coming. Whilst the commissioners’ survey found that many PCTs and Health Boards stated that they were looking at future demand for overseas care, this was not found in the case studies. The current system of using panels to assess a request is, in our opinion, unsuitable should numbers increase with the introduction of the new directive - which our research has not discounted.

The clear, consistent message throughout the research is that the concept of patient mobility and the correct application of patients’ extended rights are areas that PCTs find complex and challenging. This has contributed to some PCTs applying criteria by which they make decisions to fund that do not seem to have any basis in current legislation or case law. The NHS is therefore at considerable risk of challenge.

The majority, if not all, PCTs see overseas treatment within the EU as being a low priority area. Knowledge of processes and criteria for NHS funding of treatment abroad does not appear widely known by staff within individual PCTs. Further, the mystery shopping indicated that PCTs do not have the processes or knowledge to deal with queries, and may not be offering helpful or accurate advice.

If anything, the national picture is likely to be much worse than was found through our evidence gathering as it is likely that those PCTs that did choose to engage with the research are areas that do attempt to give this subject some priority. Our strong suspicion is that those PCTs that failed to engage (the vast majority of PCTs) treat this as a very low priority area – with no one locally who is responsible to assess requests or offer correct advice.

Our research shows that commissioners are applying criteria in deciding on whether to fund overseas treatment that appears to run counter to case law. This, coupled with the apparent lack of interest in this area from local commissioners and the potential consequences of failing to allow someone treatment abroad when they had a clear right for funding under

ii

legislation and case law, means in our opinion this is a responsibility that would be more appropriately handled nationally.

This recommendation holds if numbers stay low or increase with the new Directive. With low numbers it seems an inefficient use of resources to make each local commissioner have their own set of processes to decide on requests. If numbers increase, a higher likelihood is created that a decision will be challenged and given current local practice the decision found to be in contradiction of legislation and case law.

iii

Acknowledgements

We would like to thank all those working in the NHS and in professional organisations and patients’ associations who completed our surveys, as well as those PCTs who participated in our case studies and mystery shopping.

We are extremely grateful to everyone in the Department of Work and Pensions, Overseas Healthcare Division, especially Judith Pharoah and her team who assisted us with our collection and analysis of data on E112s.

We would like to thank Adrea Begley at DHSSPS for providing the data on E112s for Northern Ireland.

We are also grateful to Magda Rosenmoller from IESE Business School at the University of Navarra and Neil Lunt from York Management School at the University of York, who gave advice and offered material to the study, including work that they had undertaken, and to Keith Pollard from Treatment Abroad, who offered useful information and advice and who generously allowed us to use their Survey.

Finally, we would like to thank the team at the Department of Health, including Rob Dickman, Paul Whitbourn, Mark Wilson and Amy Everton, who commissioned the study, and who offered useful advice and comments throughout the project life.

Section 1: Introduction

1.1 BACKGROUND TO STUDY

Whilst most people receive their health care in the country in which they reside, patients may travel to other countries to receive healthcare. However, evidence suggests that the number of people who obtain care in another country is low, accounting for around 1% of total health care expenditure. Rules for receiving cross-border healthcare and for the reimbursement of costs are not always clear, although case law has been established by the European Court of Justice (ECJ). In July, 2008, the European Commission (EC) published a draft Directive on the application of patients' rights in cross-border healthcare, which sought to codify existing ECJ case law on patients' rights and clarify their application. This issue had previously been subject to public consultation by the EC to which the Department of Health (DH) had responded.

The DH carried out consultation on the proposed Directive in the autumn of 2008. The purpose of this consultation was to help inform the UK Government’s negotiating position on the draft Directive and begin data collection to aid assessment of the impact that the proposed Directive could have on the UK.

It is also believed that patients are increasingly confident about their rights, options and entitlements about their NHS healthcare, following a number of high profile legal rulings in Europe, many of these rights and entitlements now extend to healthcare accessed in other European countries, as confirmed in the NHS Constitution. Part of the research study investigated how widely people were of their rights in respect of cross border healthcare.

Against this backdrop, the DH commissioned a targeted research and information gathering study to collect information on public and patient knowledge, attitudes and preferences with regard to the proposed EU Cross-Border Healthcare Directive (EUCBHD), and on patient mobility issues in general.

1.2 PROCESSES FOR RECEIPT OF HEALTH CARE ABROAD

1.2.1 Overview of patient mobility

Legido –Quigley1 and her colleagues devised a useful typology to describe patient mobility, summarised in Box 1, and believe that the data available seriously underestimates the numbers seeking these routes.

Box 1.1 Broad categories of patient mobility1 Legido-Quigley H et al (2007). Patient mobility in the European Union. BMJ: 334, 188-190

Section 1 1

CategoryTemporary visitors abroad

People retiring to other countriesPeople in border regions

People sent abroad by their home systemsPeople going abroad on their own initiative

Of particular interest are those in the latter two categories. Examples of schemes in which people are sent abroad by their system include a pilot project established by the DH in 2001, under which patients from the south-east and south-west received care in French and German hospitals for orthopaedic and ophthalmic conditions, evaluated by YHEC2; the Norwegian Medical Treatment Abroad project which was used to reduce waiting lists for elective surgery; and longer term schemes under which small countries lacking specialised treatment options send patients abroad.

Rosenmoller, under the Europe4patients work, has developed a useful patient mobility typology, examining the relationship between types of patient flows, and types of arrangements, as shown in figure 1.

Figure 1 Typology of patient mobility3

Types of arrangements

Type

s of

pat

ient

flow

s

Reg 1408/71 Institutionally arranged care

Self managedcare

Abroad whenin need ofcare

Short termDouble residenceLong-term

Going abroadfor care

FamiliarityAvailabilityFinancial costsPerceived quality(bio)ethical legislation

1.2.2 Healthcare Tourism

The number of patients seeking treatment abroad under their own initiative appears to have increased reflecting ‘healthcare tourism’. Examples include receipt of dental care from Hungary, and surgery in South Africa. Intermediary companies exist which assist patients in choosing health care organisations, and arranging their care. Under this category are patients seeking treatment which may not be available in their home country, for example abortions, or fertility treatment.

1.3 PLANNED HEALTHCARE

2 Lowson K, O’Reilly J ( 2002) Evaluation of Treating Patients Overseas. Report for DH3 Rosenmoller M (2007): Patients on the Move in Europe. Presentation to EP-IMCO Hearing.

Section 1 2

Before August 2001, English purchasers were not allowed to contract with hospitals in other European countries for treatment of NHS patients. Individual patients could apply for authorisation to be treated abroad (form E112), but this was a difficult process. For example, in 2000, only 1,100 patients obtained authorisation for overseas treatment.

There are currently two parallel routes under which patients can obtain and receive payment for planned treatment from NHS Commissioners. (Unplanned treatment is covered by the European Health Insurance Card). There are subtle differences between the two schemes.

Article 22 of Regulation 1408/71

This scheme is based on agreements between governments, and there is no limit to how much will be paid, even if treatment costs more than in the NHS. The amount paid matches the treating country’s contribution. The E112 form entitles patients to treatment in the state-funded sector in another EU country and Switzerland. Treatment is provided under the same conditions of care and payment as residents of that country. Therefore in systems where patients incur co-payments, patients from other countries selecting health care in these countries may also be liable for the same co-payment, (dependent on whether the actual cost of care as paid by the NHS is lower than the costs incurred in the NHS).

Article 56

Under this scheme, a patient is treated as if they are a member of the home country. A financial contribution can be made for private or state-provided treatment, thus potentially widening the scheme. Patients have to pay for the total costs of treatment, and be re-imbursed after completion. The maximum amount that can be claimed is assessed by a local NHS commissioner, which cannot be more than the patient incurred on treatment, and which restricts the costs to those incurred under the NHS.

Commissioners have been issued with comprehensive guidance on patient mobility and on E112 application processes, including a flow chart for assessing a request by a patient to receive treatment abroad. The guidance also lays out the principles, which if followed, allow commissioners to meet the EU requirements.

The ECJ has previously criticised the NHS for not having clear criteria for managing prior authorisation systems. Of concern still, is that commissioners are not clear about the implications of patients seeking reimbursement under either route. Due to the differing re-imbursement mechanisms, one route may be more cost effective than the other, dependent on the treatment being sought. On average, re-imbursement under the article 56 route may be more cost effective for PCTs than under the E112 route, as the administrative process may be less complex, and the costs to PCTs no higher than if they commissioned the services from an NHS provider in the UK.

1.4 CURRENT EVIDENCE OF MOBILITY

Section 1 3

Evidence has been collected on a variety of projects and case studies across Europe4, for example through the Europe for Patients project, the objective of which is to contribute scientific evidence that will enable policy makers at EU and national levels to take concerted and coordinated actions to enable patients to benefit from enhanced mobility. It is believed that increased mobility offers benefits but comes with challenges.

There is limited information on the number of people who travel abroad from the UK for health related reasons. Based on data collected from the International Passenger Survey, it is estimated that around 50,000 people travel to Europe for “health reasons”. This estimate may be inaccurate due to the small sample size of those giving this reason, and the interpretation by respondents of the term “for health reasons”. The number of people receiving treatment under E112 is also believed to be small, with an estimate of around 550 in 2007. No data appears to be available for those using the article 56 route, although the number is believed to be very small in the UK.

Evidence5 from research on overseas patients schemes, suggests that few people would be willing to travel overseas for treatment. The DH, in their Impact Assessment of the EUCBHD calculated the total notional cost of travel as £770, and hence, for people to travel, they must perceive the benefit from the overseas treatment to be at least £770 higher than the benefit from NHS treatment. This relatively high cost thus supports the evidence that low numbers of patients seek treatment overseas and would in the future.

Evidence from the London Patient Choice scheme confirms this view, in which around 1,000 patients chose treatment abroad, to be paid for by the NHS. These were mostly orthopaedic patients waiting longer than six months, and were a small percentage of the total number of people who had been waiting for treatment. Most research on Choice Initiatives, including a study undertaken by YHEC into choices exercised by patients requiring ophthalmic treatment in a PCT in North Yorkshire, finds that the majority of patients prefer to be treated nearer their own home. Unfortunately, the study undertaken by YHEC for the DH on patients travelling overseas could not examine uptake, as commissioners did not collect the data on offers made and refusals. However the study was able to examine processes and patient satisfaction.

Thus, in summary, the evidence from research to date indicates variable success in the UK, with small numbers of patients availing themselves of treatment overseas, probably for a variety of reasons. Shorter waiting times, combined with active local patient choice options may now contribute to an even smaller number wishing to use this route.

1.5 THE STUDY

The study had two broad objectives:

4 Rosenmoller M et al (2006) Patient Mobility in the European Union. www.Europe4patients.org5 See Department of Health (2008) Impact Assessment of European Commission’s proposal for

legislation on patients’ rights in cross-border health care.

Section 1 4

To develop an understanding of the public’s and/or patients’ responses to the Directive, including an assessment of the likely numbers choosing to travel;

To assess the state of NHS readiness, including a review of current processes and numbers being managed.

To address these objectives, YHEC undertook eight activities, several of which were undertaken in parallel, and several of which addressed more than one objective. The objectives and activities are summarised in table 1.1.

Table 1.1 Summary of study objectives and activities

Objectives of study Understanding public/patient

attitudes

Assessment of likely numbers

choosing to travel

Assessment of NHS readiness

Study activitiesCollection of data from DWP √Public survey √ √Focus Groups with public √ √Survey of NHS commissioners √ √Case studies with NHScommissioners

√ √ √

Mystery Shopping √Survey of professional organisations and patient associations

√ √

Literature review and stakeholderinterviews

√ √ √

1.6 THE STUDY REPORT

The DH requested that a report be written following completion of the study, which comprises evidence and recommendations on:

Patient/public perceptions and motivations; The likely number of people who will travel; The state of play on the quality, timeliness and accuracy of NHS responses to

cross-border healthcare requests; Whether the NHS requires additional support from the DH, and what that support

might be; How the collection of data on cross-border healthcare might be established on a

sounder basis in the future Areas that warrant further investigation.

This report discusses in subsequent sections:

Section 2, the literature review and stakeholder interviews Section 3, collection of data on patients that have received planned healthcare

abroad with public funding Section 4, the public survey

Section 1 5

Section 5, focus groups with the public Section 6, the survey of NHS commissioners Section 7, case studies with NHS commissioners Section 8, mystery shopping, contacting NHS commissioners Section 9, the survey of professional organisations and patient associations Section 10, emergent themes and recommendations

A technical appendix is also available, providing all survey tools used, and the literature search strategy.

Section 1 6

Section 2: Literature review

Key findings Whilst some of the literature reviewed looked at cross border issues in mainland

Europe and in the US, the findings across all literature reviewed are remarkably similar, and the hypotheses raised are those tested in the study; There is an acknowledged lack of data on how many people receive healthcare

outside their country of residence: therefore this study which has collected detailed evidence provides valuable evidence for the DH;

Whilst patients are able to exercise choice on where treatment is received, most evidence suggests that they prefer to be treated closer to home. Factors which might contribute to travelling abroad for healthcare include waiting times and lower quality of care;

Planned healthcare initiatives, whereby patients received healthcare abroad, under an NHS managed scheme, had limited success. Whilst patients were happy with treatment received, healthcare professionals had concerns. These initiatives are not a feature of current policy;

The number of patients who travel abroad for healthcare for which they pay are still relatively low. These people are mostly seeking lower cost alternatives to private healthcare in the UK, and treatment received is normally not available on the NHS. The exception to this is dental care, for which there is a demand. However, the majority of those being treated abroad, are likely to pay for this treatment in the UK;

These broad findings were reflected in the study, especially in the public survey and focus groups, whereby factors influencing travel abroad were tested.

2.1 INTRODUCTION AND METHODOLOGY

The purpose of the literature review was to inform the study, the methodologies and the survey tools, as well as serving as an update for the DH on reviews, research studies, data collected, and commentaries on a range of topics of relevance to cross border healthcare.

An extensive literature search was undertaken, the methodology for which, including search terms, is shown as appendix A in the supporting technical report. Following de-duplication, 111 potentially relevant articles were identified, out of which 38 were selected for inclusion. The project budget did not include provision for an in-depth literature review; therefore articles were mostly excluded on the basis of title, although many were excluded on the basis of abstracts. The literature search was supplemented by a review of grey literature, including publications from EU websites including the European Commission, Europe for Patients, workshops and conference presentations. Stakeholder interviews also identified

Section 2 7

useful publications and sources of information. Two strands of literature yielding significant numbers of articles were ‘medical tourism’; and cross border healthcare in mainland Europe. Only the most relevant literature on these topics was examined. The full bibliography of literature included in the review is provided at the end of this report.

Additionally, an extensive literature review6 on cross-border patient mobility in the EU published in 2006 was reviewed. Given the extensive nature of this review, the authors of this report chose not to replicate the work already undertaken, but have summarised the review’s findings. The scope of this review by Glinos and Baeten was defined as “covering concrete examples”; therefore they did not look at policy documents but at studies of initiatives.

Whilst most literature reviewed is in the context of healthcare delivered within a local health care system, the issue of medical tourism addresses patients travelling outside their healthcare system with payment made by themselves, or their or employers’ insurance.

The findings have been summarised under the following themes: Discussion of policy and legal issues Data collection and surveys Patient choice Planned healthcare abroad Medical tourism

2.2 POLICY AND LEGAL ISSUES

There is extensive literature on policy and legal issues, including reports from the DH, such as consultation exercises and guidance; guidance from external organisations; and legal interpretation of case law and guidance. Additionally, many commentators have reflected on current policy, literature and studies to develop frameworks for considering cross-border healthcare.

The NHS European Office of the NHS Confederation, in a briefing7 published in June 2009 believed that “as the NHS develops the way it delivers healthcare to incorporate patient choice and a wider role for independent healthcare providers and enterprises, the extent to which NHS activity could be challenged under EU competition rules becomes less clear”. They further assert “it will be important to monitor developments in this area, including the advice given by the recently established NHS Cooperation and Competition Panel, and whether this may have the consequent effect of exposing more NHS activity to challenges under EU competition law in the future”.

Several articles, including an editorial, have been published in the BMJ, commenting on the EU proposals. McKee and Belcher8 comment “the proposed legal instrument is a framework 6 Glinos I and Baeten R (2006). A Literature Review of Cross-Border Patient Mobility in the European Union. Europe for Patients Project. www.europe4patients.orf7 NHS Confederation (2009). Briefing. What do EU competition rules mean for the NHS? www.nhsconfed.org/publications.8 McKee M and Belcher P (2008). Cross Border Health Care in Europe. BMJ, 337 a610.

Section 2 8

directive. This establishes the principles underlying subsequent legislation and sets the broad parameters within which it can operate. However, it leaves flexibility to respond to specific problems and changing circumstances”. Watson9 summarises the draft legislation in a more recent edition of the BMJ.

Several articles10 reviewed focused specifically on the legal aspects, and there are likely to be many more. These have not been summarised here, but mostly served as background information for the Evaluation Team.

Of interest to the NHS are likely to be briefings, such as that issued by the NHS Confederation, or web sites such as that developed by the DH11.

2.3 DATA ON CROSS BORDER HEALTHCARE IN THE EU

The DH commissioned this study on cross-border healthcare, in part to address the question of how many patients have travelled abroad for planned healthcare.

In answer to the question, “what is the scale of this social and health care phenomenon across Europe?”, Rosenmoller12 believes that “it is important to stress that there is practically no information about the phenomenon”. She cites a study from Germany suggesting that it affects around 1% of patients and 1% of health spending.

In the light of the perceived limited data available on how many people receive healthcare outside their country of residence across the EU, the Health Strategy Unit (C5) of the Health and Consumer Protection Directorate-General (DG SANCO) commissioned a study under the Flash Barometer framework polling citizens from all EU countries on their experiences and expectations concerning patient mobility. More than 27,000 interviews were undertaken in 2007, of which some 1,000 were undertaken in the UK. The study found that around 4% of EU citizens had received medical treatment in another EU country including urgent care, but that more than half interviewed are open to travel to another EU country. More detailed comments on this study are discussed in section 3 of this report, comparing the study results with those of our public survey.

Treatment Abroad, a medical tourism broker and website have conducted surveys of those using their website. They compiled data from 132 healthcare providers in 30 countries that promoted their services to the UK market. Their recent survey (from 2008) estimated that around 50,000 people travelled abroad in that year, and spent around £161 million, with dentistry being the most popular option. They estimate that around 20,000 people from the UK travel abroad for dental care, spending around £2,500 each.

9 Watson R (2009). EU strengthens requirements for patients to get prior approval before being treated abroad. BMJ; 338 b140010 For example:Sellars C (2008) Cross border access to healthcare services within the European Union. World Hospitals and Health Services, vol 2, 1 pp24-27Coucher S (2002) The legal framework in relation to patient mobility Common Market Law Review11 http://www.nhs.uk/NHSEngland/Healthcareabroad/Pages/Healthcareabroad.aspx12 Rosenmoller M quoted in article by Ros M (2009). Monograph Compartir.

Section 2 9

Vallejo13 et al undertook a study the aim of which was to estimate the volume and main diagnoses of cross-border care in eight EU countries. They combined findings from three independent studies compiling self-reported information on admissions data from over 200 hospitals. They found that cross border admissions accounted for less than 1% of the total admissions in the hospitals studied, which was probably an underestimate. They acknowledged limitations of their study as a result of, for example, the inability to independently identify cross-border patients in hospitals’ databases, low validity of information, and uses of different coding systems. Common patient conditions included diseases of the circulatory system (mainly acute myocardial infarction), fractures and obstetric care.

2.4 PATIENT CHOICE

Of relevance to decisions on travelling abroad for planned healthcare, is the issue of patient choice. There is extensive literature on patient choice, which has been reviewed elsewhere, and we have not replicated this. We have, however, extracted the key points from an SDO14

review of the literature, and have examined the findings from a study by the Rand15

organisation for the DH. We have also extracted findings from the review by Glinos and Baeten.

Fotaki et al found that patient choice for health care was not a high priority for NHS patients However, there was interest in patients choosing their hospital; for example, when they faced problems with their local providers such as long waiting times. The London Patient Choice Pilot is an example. Fotaki et al did examine evidence from other health care systems, and found that in health systems sharing similar features with the NHS, there is little enthusiasm by patients in these countries to take up choice of provider.

Burge et al found that patients preferred higher quality hospitals, and GPs’ advice over which hospital to choose, whilst being important, did not override other information, such as hospital performance and travel times. Patients, unsurprisingly, had a preference for shorter travel times, and for lower travel costs (irrespective of eligibility under schemes which paid for travel costs). Certain patient characteristics were associated with loyalty (i.e. a higher propensity to select local hospitals), including having poor health or travelling to their local hospital by bus. Those with internet access or having a poor perception of their local hospital were more likely to be disloyal.

Glinos and Baeten, found that patients’ preference or willingness for cross border healthcare could be explained under five key drivers or determinants: familiarity and proximity; availability (quantity and type of services, for example insufficient capacity leading to excessive waiting times, or the requirement for specialist care); financial costs (for example where there are significant co-payments); perceived quality (due to dissatisfaction with local

13 Vallejo P et al (2009). Volume and diagnosis: an approach to cross-border care in eight European countries. Qual. Saf. Health Care: 18; i8-i14.14 Fotaki M et al (2005) Patient Choice and the Organisation and Delivery of Services. Report for NCCSDO by Manchester Business School15 Burge P et al (2006) Understanding Patients’ Choices at the Point of Referral. Report for DH by Rand Corporation

Section 2 10

systems), and bioethical legislation (in which patients will travel elsewhere for abortions or IVF treatment).

The findings on patient choice were fed into the development of the patient survey tools.

2.5 PLANNED HEALTHCARE INITIATIVES

Four initiatives are highlighted here: three from the UK and one from Norway. All four were undertaken against a back drop of long waiting times, and three were designed not only to increase patient choice and reduce their waiting times, but also to be a catalyst for change in local systems.

Lowson16 et al evaluated in a study for the DH, an initiative in the south of England across three health economies supported by the local Regional Health Authority. An estimated 300 patients facing long waiting times for ophthalmic and orthopaedic treatment would travel to clinics and hospitals in France and Germany. The study found that although 300 had been planned to travel, only 190 were actually treated under the scheme. Fewer patients were sent to Germany because contracting was more time consuming than expected, patient selection was conservative and resources were limited. UK doctors were not cooperative, expressing concerns over who would be responsible for complications, and lack of continuity of care. Patients, on the other hand, mostly reported having very positive experiences, although there were some problems with travel arrangements.

Glinos17 et al undertook a study of patients treated in Belgium from the UK, which had similar findings. Around 600 patients were treated for hip and knee replacements, for which there were long waiting lists. Again, although patients reported having positive experiences, some local NHS providers showed opposition to the scheme and hindered cooperation. The contracting process was also complex.

Evidence from the London Patient Choice Project of 2002-03 indicate that, where there are long waiting lists, patients will go abroad for healthcare, with uptake at between 65-75%. However, the evaluations indicated that lack of clarity in selection of patients may have influenced uptake.

Botten18 et al reported on a project in Norway (the Patient Bridge), initiated by the Norwegian Government, in which long waiting lists led to the sending of patients to other providers in Europe for their healthcare. The Project was found to be relatively expensive due to transaction and transport costs, and the relatively high treatment costs. Excessive treatment costs were believed to be a result of insufficient cost awareness by health care purchasers. The Project revealed large price differentials between Norwegian and other European hospitals and within Norway, (these are not issues for current cross-border activities in the UK). Patients were willing to participate if properly informed and supported by their local

16 Lowson K et al (2002). Evaluation of Treating Patients Overseas. Report for DH by YHEC, University of York17 Glinos I et al (2005) Cross-border healthcare in Belgian hospital: An analysis of Belgian, Dutch and English Stakeholder Perspectives. Brussels, Observatoire social europeen: 89.18 Botten G et al (2004) Trading patient: Lessons from Scandinavia. Health Policy, 69, pp317-27

Section 2 11

health care workers. On the other hand, the health policy met with resistance among hospital physicians.

Planned healthcare initiatives, such as those described above, do not seem to be a feature of current UK healthcare policy, although possibly more common in mainland Europe and in Ireland.

2.6 MEDICAL TOURISM

The term ‘medical tourism’ can be applied to any patient choosing to travel abroad for health care, or more specifically to those travelling outside the financing and contracting constraints of the local healthcare systems. Medical tourism has grown rapidly in the last 10 years, especially for cosmetic surgery. High costs and long waiting lists in the home country, and new technology and lower costs in destination countries, combined with reduced transport costs and internet marketing have all contributed to this growth.

Much of the literature comes from the US, where rising costs are fuelling a movement to outsource medical treatment. York19 gives estimates of the number of Americans travelling outside the US for healthcare to be between 50,000 – 500,000, with charges for procedures such as heart bypass being $11,000 in Thailand, compared to $130,000 in the US. He cites “a new industry, medical tourism [which] has been created to advise patients on the appropriate facility in the right country for their condition, handle all travel arrangement….”

Lunt and Carerra20 (2009) in a conference presentation, assert that the reasons for medical tourism include costs of treatment, speed in obtaining treatment, treatment not being available (or legal), a desire for privacy, and the ability to combine tourist attractions with procedures. Leggat21, commenting on the particular case of dental tourism, concurs, suggesting that it is driven by the increasing costs of dentistry, dental waiting lists and dental workforce issues.

Of concern for all health tourists is aftercare, whether this be received by the providers of the original healthcare (thus possibly necessitating an extended stay in the destination country), or in the healthcare system of residence. Issues were raised in the planned cross-border healthcare pilots discussed above. Leggat, for example, also comments that the main difficulty with dental tourism is follow-up.

The role of brokers is interesting, since an issue is how individuals and/or individual organisations determine the market, source information, and determine which providers to choose. There are many websites dedicated to this purpose (Treatment Abroad being a prime example), and some websites specialise in procedures, such as cosmetic surgery or dentistry, or in particular destinations, such as Poland or Hungary. If medical tourists

19 York D (2008). Medical Tourism: the trend toward outsourcing medical procedures to foreign countries. Journal of Continuing Education in Health Professions. 28 (2) 99-102.20 Lunt N and Carrera P (June 2009) Research to better understand the medical tourist industry. Conference presentation to Health Investor Conference. 21 Leggat P (2009) Dental health, dental tourism and travellers. Travel medicine and Infectious Disease 7, 123-124

Section 2 12

themselves are paying, they can be seen as consumers, spending on a range of medical care. Yet, consumers are normally protected in law, and of concern is obviously how to ensure quality and safety for healthcare, and hence what are the regulatory and accreditation frameworks around these organisations (the medical tourism brokers and the healthcare providers).

Studies of the extent of cross border health care have indicated that the numbers of patients are still low (around 1%), although even a doubling of this to 2% would represent a significant number of patients. Given the apparent rise in patients taking advantage of medical tourism, it was estimated that around 6 million Americans would seek healthcare outside the US by 2010. This figure has been dramatically revised downwards to 1.6m. Youngman22 comments that, in contrast to the prediction that big health insurers and employers would send thousands of employees overseas, very small numbers of patients have actually benefitted, although the option has been available to some employees in their group health plans. Insurers appear to be concerned about medical liability and medical malpractice, but more interestingly, this exploration of healthcare abroad has led to an increasing number of hospitals within the US offering discounted packages to counter the foreign competition. Under ‘internal’ medical tourism, patients may travel to another city within the US to have procedures which may be up to 75% less than if treated closer to home.

As stated earlier, medical tourism is not a significant factor for UK healthcare, although more patients have planned healthcare under medical tourism than under E112 or article 56 routes. Treatment Abroad, a major healthcare broker and information website for potential UK medical tourists, predicts that the number, which grew by 25% in 12 months during 2008, will continue to grow, from the estimated 50,000 in 2007. Most treatment received is not available on the NHS, although a significant number receive dental care. Those receiving dental care abroad are likely to be private patients, rather than NHS patients, and even if they were NHS patients, only a proportion of the costs would accrue to the NHS. Nonetheless, if a proportion of these patients sought the care in the UK through NHS dentistry, and on finding problems accessing NHS dentists and facing long waiting times for dental care, may choose to claim for care received abroad under article 56 route. This route does not require prior authorisation since dental care does not include inpatient care.

22 Youngman I (2009). What happened to those 2008 medical tourism forecasts? http://www.imtjonline.com/articles/2009/what-happened-to-those-2008-medical-toursim-forecasts-30002/

Section 2 13

Section 3: Collection of Data on Patients Receiving Planned Treatment Abroad Funded by the NHS

Key Points To the year ending 13 November 2009 there were 747 E112s issued by the DWP.

108 of these were non-maternity relating to 64 patients, 47 of whom were British. We estimate the costs of these 108 E112s to be no more than £1.1million or £17,000 per E112

Given the low numbers of E112s issued, the majority of PCTs did not agree to fund planned healthcare abroad using an E112 in the 12 months analysed

Only seven British people had instigated the request for planned treatment abroad. The remainder were instigated by consultants who thought that treatment abroad was in the best interest of their patients, usually because the treatment was unavailable in the UK. All cases could be described as patients with conditions that were either life threatening or significantly impacted on quality of life

The 47 non maternity E112s were issued as patients wanted treatment close to their family, treatment with clinicians that they knew or treatment where a language barrier would not be a problem. These reasons were also those that people appeared to provide for seeking maternity care abroad

Over the same 12 month period there were a further 104 requests for funding for treatment abroad that had not resulted in an E112 being issued. Of these, 32 were requests for reimbursement of treatment already received with the remainder being informed that they must contact their local healthcare commissioner

The DWP reported that they receive around 230 calls a month about treatment abroad. No detail was available on how many of these calls are unique cases or how many of these calls relate to planned healthcare abroad

3.1 INTRODUCTION

As described earlier in this report, patients receiving healthcare abroad will either be funded privately (via their healthcare insurance or fee for service payment by the patient) or be publically funded via E112 or article 56 (for planned healthcare) or via the European Health Insurance card (EHIC) for emergency healthcare.

A patient wanting to access treatment abroad, for whatever reason, may obtain prior authorisation from their PCT, which sends the request including a clinical opinion, to the

Section 3 14

Department of Work and Pensions (DWP) for issuing of form E112. E112 requests for England, Scotland and Wales are sent to the Medical Benefits Team at the DWP and to the Department of Health, Social Services and Public Safety (DHSSPS) in Northern Ireland.

Funding under article 56 is made via the PCT, reimbursing a patient that has already received treatment for which authorisation has been given.

We obtained data on those patients that have received planned healthcare abroad by:

Collecting data from the DWP on treatment funded under E112 Collecting data from PCTs on treatment funded under article 56 (discussed in

section 6)

3.2 ANALYSIS OF E112 DATA

We extracted data from the DWP records for patients who had been treated and funded under an E112 for non-maternity care over a 12 month period. Data on these patients included: condition, treatment, reason for treatment outside the UK, age and gender, country of origin and country of treatment; as well as data on the authorisation of the E112, for example, which PCT, whether the PCT used a panel or a specialised process, and the costs. We also collected data about those patients for whom a request for an E112 authorisation had been submitted but not granted, and the processes around the submission. Importantly for the overall aims of the research, we also recorded who initially requested treatment abroad for example, was it the patient themselves or was it on the advice of a clinician.

DWP provided total numbers of E112 authorisations for the same 12 month period, broken down by country of treatment. However, we were unable to obtain a breakdown by maternity and non-maternity. Therefore we estimated the number and country of treatment for those who received an E112 for maternity care, by extracting the data on known non-maternity E112s.

Data from Northern Ireland was provided separately by the DHSSPS.

3.3 FINDINGS FOR E112 ANALYSIS

3.3.1 E112s issued by the DWP

In total, there were 747 E112s issued by the DWP in the year to 13 November 2009. By reviewing paper files, we estimate that 108 of these were non-maternity and 639 maternity. Of all E112s issued, the top five destination countries are presented in Table 1 below.

Table 3.1: Destination country of E112 recipients for year ending 13 November 2009

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Country Number of E112s Percentage of all E112sPoland 351 47%France 106 14%

Germany 82 11%Spain 57 8%

Slovakia 37 5%Others (17 countries) 114 15%

Total 747 100%

Whilst maternity cases account for more than 90% of all E112s issued, the non-maternity cases were of more interest to the research. For completeness, around 100 maternity paper cases were reviewed that indicated the reasons people wished to give birth abroad were predominantly to be close to family. Over 50% of all maternity E112s were for maternity care in Poland.

What is noteworthy about these requests is the requirement on pregnant women to justify their reason for choosing to give birth abroad. Given that this is only reviewed by the DWP and in no way influences their decision it would appear to be at best an unnecessary requirement and at worst an intrusion on privacy.

Turning to the 108 non-maternity cases, the most significant finding is the very low numbers actually issued. The 108 cases relate to only 64 patients, with multiple E112s being issued for single ‘events’, in some cases to cover pre operation assessment, inpatient stays, rehabilitation and follow up consultations.

Table 3.2 shows the distribution of these 64 patients by nationality and whether they were treated in their home country, for the year ending 13 November 2009.

Table 3.2: Nationality and Destination country of non-maternity E112 patients

Nationality Treatment in own country

Treatment in other country Not known

Belgian 2 0 0British - 47 0Dutch 1 0 0Finish 1 0 0French 4 0 0German 4 0 0Polish 2 0 0

Slovakian 1 0 0Swiss 1 0 0

Not known - - 1Total 16 47 1

As can be seen from Table 3.2, the majority (73%) of all non-maternity E112s were issued to British nationals. Of the 16 non-British recipients where the nationality was known, all were treated in their own country. It is of note that the E112s issued to non-British nationals are almost in their entirety issued as maternity requests. Those that are non-maternity were

Section 3 16

almost entirely issued to patients who wanted to be close to family to receive treatment – usually as they had cancer. There is no evidence that E112s are being used by foreign nationals as a route to access funding for healthcare elsewhere in the EU.

Of the 47 British nationals with an E112, Table 3.3 shows that treatment was provided in eleven other EU countries.

Table 3.3: Treating country for British nationals with a non-maternity E112

Treating Country Number PercentageAustria 3 6%Belgium 12 26%Finland 1 2%France 13 28%

Germany 2 4%Holland 2 4%

Italy 1 2%Norway 2 4%Spain 1 2%

Sweden 3 6%Switzerland 7 15%Grand Total 47 100%

Only seven of the 47 (15%) of the E112s for British nationals were issued because the patient had requested treatment abroad. Of these three appeared to live abroad or planned to live abroad, two wanted follow up treatment in the clinic where they had received earlier treatment, and two because they felt the quality of treatment would be better overseas. The remaining 40 patients were referred abroad by their consultant or their PCT (potentially on a consultant’s advice) with 36 (90%) of these referrals because treatment was unavailable in the UK.

There was no particular pattern or cluster of conditions for E112s issued to British nationals, although conditions could all be described as significant including cancer, gender dysmorphia and severe epilepsy.

The records indicated that around 45 PCTs or commissioning bodies agreed to fund a non-maternity E112 with around 25 only issuing them to one patient. One PCT agreed to fund overseas treatment through an E112 to nine patients. This was more than any other PCT.

3.3.2 E112s requested from the DWP but not issued

In addition to the 64 patients being issued with an E112, a further 104 people requested non-maternity E112s that had not at the time of the research been issued. In most of these cases it would seem unlikely that an E112 would be issued. Thirty two (31%) were individuals writing to the DWP for funding for treatment they had already received. However, E112s appear not to be normally issued retrospectively (although a few exceptions to this rule were found). Of the remaining patients the majority were writing to the DWP to request

Section 3 17

treatment abroad with the DWP informing them they had to contact their GP and local healthcare commissioner to see if they would fund treatment abroad.

The nationalities of patients requesting an E112 but not having one issued indicates that 41% of the small number of total requests is from Polish nationals and 19% from British.

With such a small sample care must be taken to read too much into the reasons for requests for the E112s that were not issued. The reasons for non-issuance from the DWP perspective were due to failure to comply with the process rather than clinical need. The majority of these requests were because of familiarity with clinicians overseas, the absence of a language barrier or the desire to be close to family.

Of the 20 requests relating to British nationals, only nine were requests from the patients themselves with the remainder requests from treating hospitals overseas looking for reimbursement sometimes through an E107.  The E107 is a form used to request proof of entitlement to benefits by a treating healthcare system to the 'home' country and would ordinarily relate to emergency treatment where an EHIC was not presented by the patient.  The numbers of E112 requests via E107 are very small however and, whilst illustrating some confusion in the system that is European wide, are not worth further comment. Of the patients requesting an E112, where a reason was recorded it was either because they lived abroad for part of the year or they had had emergency treatment under EHIC and the hospital has asked the patient for an E112 to cover necessary planned follow up treatment.

3.3.3 Enquiries about E112

The DWP keep a log on the number of enquiries made via telephone about the E112. Over the past ten months this has averaged around 230 calls per month or around 3,000 calls a year. Given that only about 850 people requested via writing or were issued an E112 over the preceding twelve months, it is not clear what these calls relate to, although there can be multiple calls about the same case.

3.3.4 E112s issued in Northern Ireland

Data was provided by the DHSSPS on E112s issued between April 2008 and September 2009. In total, there were 24 E112s issued, 13 of which were maternity. Of the non-maternity E112s, seven were for treatment in the Republic of Ireland and two each in Germany and Belgium. The patients going to the Republic of Ireland did so because treatment was not available in the North or the waiting time was too long. Patients went to Germany and Belgium for operations that followed a separate pathway to that in the UK.

3.3.6 Estimated costs of non-maternity E112sThe objective was to generate an upper bound to the total cost. We took the conditions and treatments for each of patients about whom we had collected data. As far as possible, we took costs from Reference Costs if the costs were not provided in the patient record at DWP. However, we had to make assumptions in the calculation of the costs, as many of the

Section 3 18

treatments neither had costs in the patient records, nor were there published reference costs as the treatment was not always available in the UK.

Therefore our methodology was to: Use the costs given where provided, and copy these to the same treatments where

no estimate was given (for example, in costing Proton Therapy, six patients had received it, but only one estimate of costs were given so this same cost was applied to the remaining five)

Find the most expensive ‘close’’ treatment for those treatment where a good proxy can be found (for example, to cost “ankle surgery – retinaculum”, we used “major foot procedures for non-trauma” with an inpatient stay. We then added 10%, and rounded it to the nearest £1,000)

Where no good proxy could be found, we used a similar treatment from the E112 costs

Euros were converted into pounds at a 1:1 exchange rate Where a range of costs was given in an E112, the upper estimate was used.

Thus, all our estimates generate the most expensive plausible cost. Our estimate comes to £1.1million, or around £17,000 per patient. These costs exclude all travel and accommodation. Appendix A provides the detailed calculations.

3.4 ANALYSIS OF EHIC CLAIMS

It is estimated by the DWP that around 40,000 EHIC claims will be made this year. The purpose of the visit to the DWP was not to explore EHIC claims, but in conversation with people in the Medical Claims department there was a suspicion that many EHIC claims were dental or orthopaedic related and may actually be health tourism and not genuine emergencies. Unfortunately, little data is captured on EHIC claims. They are processed and paid in batches of several thousand. The claims themselves are often in a foreign language with little supporting information behind the claim therefore we could not evidence the belief that large numbers of EHIC claims for dental or orthopaedic were inappropriate.

3.5 ANALYSIS OF ARTICLE 56 DATA

Data on patients treated via article 56 route can only be obtained from health care commissioners, as they authorise and pay for healthcare under this route. There is no central data collection. A survey was sent to commissioners requesting information about the processes adopted to review and authorise requests to receive healthcare overseas (discussed in more detail in section 6). This survey also requested information about authorisations under E112 (to cross check with data collected from DWP) and under article 56. Analysis of article 56 data is given in section 6.

Section 3 19

Section 4: Analysis of the Public Survey

Key findings Of a 1004 member sample, stratified in line with characteristics of members of the

Treatment Abroad study and recipients of E112s, a small proportion had previously considered travelling abroad for treatment;

An even smaller number had previously travelled abroad for planned healthcare, and only 3 individuals used the NHS as a primary source of funding;

Although participants indicated a degree of interest towards receiving healthcare abroad funded by the NHS, processes for accessing further information were not found to be wholly clear;

Clearer and easier access may increase the numbers of those using healthcare abroad service, but following analysis of current numbers and the extent of disadvantages reported, it would be unlikely for a large increase in numbers;

Results indicate that middle-aged people are more aware of the service, but younger people have greater access to information and are more willing to travel;

As this age group is less likely to require extensive treatment, this further supports the notion that numbers requesting healthcare abroad will not dramatically increase;

The findings of our survey are in line with those from the EU Flashbarometer survey; Consistent messages from across all EU counties are that whilst many might consider

travelling outside their country to receive healthcare, neither our survey, nor the EU survey suggest that this consideration will be translated into demand and that the numbers are likely to increase under current supply of healthcare, such as the management of waiting lists.

4.1 METHODOLOGY

4.1.1 Introduction

A telephone survey was conducted on a sample of the general public in order to assess knowledge, attitudes and preferences about travelling abroad for healthcare. The survey was undertaken by QA Research23, a social and health care market research company commissioned by YHEC to carry out the interviews. This section summarises the findings. More detail on the methodology and the findings including tabular analysis is given in the technical appendix to this report.

4.1.2 Sample

In total, the sample comprised 1004 members of the general public. A sampling strategy was devised which reflected the age and gender structure of the Treatment Abroad

23 http://www.qaresearch.co.uk/

Section 4 20

respondents24 and those in receipt of E112s. As a result of this stratification, the sample was younger than the general population that uses health care inside the UK.

4.1.3 Questioning route

The development of the questioning route used in the telephone survey (see Technical Report, Appendix A) was informed by findings from the literature review (see section 2) and the analysis of collected data from the Department of Work and Pensions (see section 3). Further to this, comments were received from the DH team and QA Research. The following areas were examined in the telephone survey interview guide:

Whether respondents had received treatment abroad; If they had, what processes were adopted (how information was obtained, how

choices were made); If they had, what were their reasons for seeking treatment abroad; If they had not, for what conditions would they travel and why; If they had not, what paths would they take to obtain information; Interviewees’ knowledge of NHS funded routes; Whether NHS funded routes would be used or why they would not be used.

4.1.4 The Telephone survey

Researchers from QA Research carried out the survey using a computer-assisted telephone interviewing (CATI) system. The survey was carried out in three phases (see figure 4.1)

Figure 4.1 Three phases of the survey

The pilot phase(50 respondents)

The main phase(750 respondents)

The final phase(204 respondents)

The survey was initially piloted on 50 respondents. Once the pilot had been completed, the main phase was undertaken where 750 respondents were surveyed. However, the

24 Treatment Abroad. Medical Tourist Survey 2008: The motivations and experiences of 648 medical tourists. Intuition Communications. Accessible at: www.treatmentabroad.com. NB: Individuals receiving cosmetic surgery abroad were exempt from analysis as this treatment would not be funded by the NHS

Section 4 21

proportion of respondents from ethnic backgrounds was too low, so a final phase was undertaken with 204 respondents, sampled so as to increase the proportion of individuals from ethnic backgrounds in the total sample.

4.1.5 Demographics of participantsAs the sampling strategy used was aimed at reflecting the age and gender structure of the Treatment Abroad respondents and those in receipt of E112s that the sample was overall younger than that of the general population that uses health care inside the UK, with the highest percentage of individuals falling into the age bands of 45-64. However there was fairly even coverage of both genders (42% males, 58% females) in the sample. A more detailed analysis of the demographic make-up of respondents is given in the technical appendix.

Table 4.1 Age of participants (Base 1004)

Age n Percentage of respondents (%)

General Population (%)*

18-24 22 2 8**

25-34 73 7 1935-44 190 19 2045-54 270 27 1755-64 270 27 1565-74 136 14 1175-84 40 4 785+ 3 0 3

*Taken from 2001 census. Split of population aged 20 and over

**Aged 20-24

Following the final sample, individuals from White British backgrounds comprised 94% (n=906) and 6% (n=56) were individuals from BME backgrounds However, since the ethnicities of individuals who seek healthcare abroad is unknown we do not know whether the ethnicity of the sample was an accurate reflection of individuals who travel abroad for planned healthcare. Yet a comparison of the percentage of individuals from ethnic backgrounds in the sample (5.7%) to the general population (7.9%25) illustrated that the sample was a fairly accurate representation of the general population.

Participants were classified into social grades based upon their socioeconomic status. The proposed classifications, as presented in table 4.2, indicate the sample contained a high proportion of individuals from middle to lower middle class backgrounds. However, the socioeconomic class of individuals who have sought planned health care abroad is unknown, making it unfeasible to make appropriate judgments of accuracy in reflecting the population most likely to travel abroad for health care.

Table 4.2 Social Grade of participants

Social Grade Description Number of respondents25 Source: The UK Population by ethnic group, April 2001. Office for National Statistics [Online]. Available

at: http://www.statistics.gov.uk/cci/nugget.asp?id=273

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A Upper middle class 33B Middle class 293

C1 Lower middle class 267C2 Skilled working class 196D Working class 169E Subsistence 46

Total - 1004Note: Social classification is based upon the National Readership Survey (JICNAR)

4.2 FINDINGS

4.2.1 Participants reported to have lived abroad

The first set of questions was designed to define and delineate members of the sample who had received healthcare abroad as a result of residing outside of the UK. Of our sample of 1004, 11% (n=114) lived abroad. Of the 114, 85% (n=97) lived in the EU. Only 15% (n=17) of the 114 individuals who lived abroad received planned healthcare. Out of the 17 individuals who received planned healthcare abroad, whilst living abroad, 5 respondents did not specify the type of healthcare received. The most frequently reported types of healthcare received were for fractures (n=2) and giving birth (n=2). Other types of healthcare were individually reported and ranged from minor surgery to vaccinations.

4.2.2 Participants reported to have travelled abroad and received unplanned or emergency healthcare

The line of questioning in the survey then moved towards individuals who had travelled abroad and received unplanned or emergency healthcare, in order to separate that group and make the distinction. Of the entire sample, 461 (46%) individuals had previously travelled abroad in the EU. Only 9 of the 461 individuals who travelled abroad in the EU received unplanned or emergency healthcare.

Of these 9 individuals who had received unplanned or emergency healthcare in the EU, 3 individuals used private healthcare cover and 8 individuals used an EHIC card (2 individuals usd both methods). None of the 8 individuals who used their EHIC cards reported any problems in doing so.

The emergency or unplanned healthcare was received in 4 countries with Spain being the most frequent location (n=5), followed by France (n=2), and Greece and Tenerife (1 in each)

4.2.3 Awareness of accessing planned healthcare abroad

The entire sample was asked about their level of awareness regarding planned healthcare abroad funded by the NHS and the available methods of accessing this service. 62% (n=624) were aware of being able to receive planned healthcare abroad funded by the NHS. However, of these 624 individuals who were aware of this service, less than half (n=257) were aware of where to go for advice on this service.

Section 4 23

When analysing the demographic make-up of the group, we found that awareness of planned healthcare abroad is more prevalent within middle aged and elderly people as opposed to younger individuals, which reflects age characteristics of travel abroad respondents and those in receipt of E112s. However knowledge of the methods and systems in place in order to obtain information regarding receiving healthcare abroad appears to be limited. We also found relatively low levels of knowledge in minority groups. 36% of Black individuals and 42% of Asian individuals in the sample reported awareness in comparison to 63% of white individuals. When considering the higher proportion of white individuals in the sample compared to BME, the level of reported knowledge is relatively low in ethnic groups.

The entire sample, but excluding those whom had stated they were aware of where to go for advice, were then asked about the mediums of advice they would use if considering planned healthcare abroad (n=637). Table 4.7 presents the 7 most frequent responses. Whilst 111 (18%) individuals stated they did not know where to go to seek advice, the most frequent response was to consult a Dr or GP (n=268). The second most frequent response was to look on the internet (n=112). 37 individuals stated they would approach the hospital for advice, whilst 36 would approach the NHS in general. The Post Office (n=11) and Insurance Companies (n=11) were other suggested mediums. The range of mediums of advice reported in these results indicates a lack of clear and obvious sources of advice for those seeking information on planned healthcare abroad.

Table 4.7 Most frequent mediums of advice participants would use (Base 637)

Medium of Advice n %Doctor 268 42Internet 112 18Don’t know 111 17Hospital 37 6NHS 36 6Post Office 11 2Insurance Company 11 2

A breakdown of the mediums sought by age revealed that percentages of individuals in each band were fairly consistent across each of the reported mediums. An exception was the higher percentage of individuals aged 18-24 (23%) and 25-34 (19%) who would use the internet to seek advice, in comparison to lower percentages in older age bands. This naturally reflects the younger generation’s higher level of familiarity with technology.

4.2.4 Perceptions of planned healthcare abroad

The entire sample was asked about whether they had considered going abroad for planned healthcare.

Of the entire sample (n=1004), only 45 individuals stated they had previously considered planned healthcare abroad. Over half of the 45 participants (n=26) would consider planned healthcare abroad in EU countries. 11 individuals would consider countries outside of the EU, whilst 6 participants did not consider any country in particular and 2 did not disclose.

Section 4 24

A cross tabulation by age and gender in participants who had previously considered going abroad indicated very little difference by gender. In terms of age, a higher percentage of 18-24 year olds (9%), 35-44 year olds (7%) and 45-54 year olds (4%) were. This outcome is not entirely typical of Treatment Abroad respondents and those in receipt of E112s. It appears that older age groups are more aware of planned healthcare abroad funded by the NHS, but younger people are more willing to consider it as a viable option.

A further cross tabulation was conducted on the ethnicity and gender of participants who told us they had considered receiving planned healthcare abroad. The results were not typical of the stratified sample, with higher percentages in Black (18%), Asian (11%) and other minorities (15%) being more likely to consider going abroad for planned healthcare compared to White respondents (4%). Therefore consideration of planned healthcare abroad was much higher in participants from non-white backgrounds.

The 45 participants whom had considered healthcare abroad were asked to provide reasons as to why they had considered planned healthcare abroad. The most frequently reported reasons are presented in table 4.8 with comparisons to outcomes in the Treatment Abroad Study where results are fairly similar.

Table 4.8 Most frequent reasons for participants considering healthcare abroad (Base: 45)

Reason n % Participants in Treatment Abroad

Study (%)Could not afford private healthcare in UK

17 38 64

To avoid long waiting times 13 29 47Perceived higher quality of facilities abroad

8 18 38

Cheaper 6 13 64Dissatisfaction with existinghealthcare provider

6 13 -

We asked the whole sample what they perceived to be the advantages and disadvantages of travelling abroad for treatment funded by the NHS. The results are shown in table 4.9. The most frequent reason was an inability to afford private healthcare in the UK. The second most frequently reported reason was the avoidance of long waiting times in the UK (n=13). 8 participants claimed the perception of higher quality healthcare facilities abroad was a reason for their consideration, whilst cheaper healthcare costs was a primary consideration for 6 individuals.

When asked to expand on their dissatisfaction with existing healthcare providers, individuals claimed dissatisfaction with NHS staff (n=3), cleanliness in NHS hospitals (n=1), lack of speed (n=1) and ‘everything’ (n=1).

Section 4 25

With only 45 individuals reporting to have considered healthcare abroad in the past, there is not a great deal of concern to be drawn. The reasons provided are based upon costs (inability to afford private care and seeking cheaper care abroad) or dissatisfaction with current services (waiting times, perception of higher quality facilities abroad).

Table 4.9 Perceived advantages and disadvantages of travelling abroad for treatment with the NHS (Base 1004)

Advantage n % Disadvantage n %To avoid long waiting times 503 50 I want to have care close to my

family and where I live 285 28

No advantages 296 29 Concern about not speaking the same language 223 21

Perceived higher quality offacilities abroad 105 10 Travelling 211 21

Perceived higher quality of staff abroad 60 6 Too complicated to organise 86 9

Private Healthcare not asexpensive abroad 45 4 Happy with my NHS care 70 7

Access to treatments notavailable in the UK 42 4 Cost 65 6

Combine with holiday 25 2 No disadvantages 64 6Concerns about cleanliness in UK hospitals 22 2 Don’t know 31 3

Can receive health at own convenience 14 1 General discomfort going

abroad 30 3

It would be cheaper 14 1 Care might not be up to NHS standards 13 1

Concerns about contracting an infection 13 1 I am healthy and do not need

healthcare 9 1

Able to access treatments not available on NHS 13 1 NHS should not be funding

healthcare abroad 7 1

Don’t know 13 1 Getting time off work would be awkward 6 1

Dissatisfaction with currenthealthcare provider 6 1 May be difficult if disabled 5 0

For the weather 6 1 It depends on thecountry/circumstances 5 0

Would only go for cosmetic surgery 3 0 Don’t think I’ll be able to get

insurance 3 0

There is more choice 3 0 Don’t have a passport 3 0It would depend 2 No need 3 0If family live there 2 0 Food would be an issue 1 0A more personal service 2 0 Unable to watch TV 1Already covered for it 1 0 Waiting times abroad may not

be better 1 0

Food is much better 1 0 The work is done too quickly 1 0Good for recovery 1 0It would be guaranteed 1 0Understanding those treating you more 1 0

Spending time abroad anyway 1 0You wouldn’t have to pay in cash 1 0

TOTAL 1196* 100 TOTAL 1123 100

Section 4 26

*Please note, categories are not exclusive and responses do overlap. Respondents could give more than one response.

Although 29% of the sample did not perceive any particular advantages towards planned healthcare abroad, the most frequently reported advantage was the avoidance of long waiting times in the NHS, and was shared by 50% of the sample (n=503). The perception of higher quality healthcare facilities abroad was the second highest advantage report (n=105), whilst cheaper costs (n=45) and access to treatment that are not available in the UK (n=42) were also reported.

The most frequent disadvantage, reported by 28% of the sample, was the inability to have family close by when undergoing treatment (n=285). The second most frequently reported issues were concern over not speaking the same language as healthcare providers abroad (n=215) and issues with regards to travelling before and after treatment (n=211). Elements regarding a lack of awareness towards healthcare abroad service funded by the NHS were expressed through perceived disadvantages of complicated logistics in organising the healthcare (n=86) and cost (n=65). However, a positive view was presented in that 70 individuals reported they were happy with current NHS care and saw no reason to consider travelling abroad.

We examined the demographic make-up of those individuals who stated avoidance of long waiting lists to be an advantage of receiving planned healthcare abroad funded by the NHS. The highest frequencies of this perception were reported in the middle-aged bands; 52% of individuals aged 35-44, 50% of individuals aged 45-54 and 54% of individuals aged 55-64 shared this perception which is typical of the Treatment Abroad respondents and recipients of E112s. Very little difference was found across genders in this cross tabulation.

A cross tabulation of ethnicity and age in response to the same query indicated this perception was predominantly shared by white individuals, with low percentages of response from black respondents (27%), Asian respondents (37%) and individuals from other backgrounds (35%).

The second most frequent advantage reported was the perception of higher quality services abroad. A cross tabulation by age and gender revealed that a higher percentage of females (29%) and males (38%) aged 18-24 shared this view, whilst the most frequently populated age bands (45-54 and 55-64) had substantially lower percentages in comparison. A cross tabulation of ethnicity and gender for this query indicated this perception was held fairly equally across ethnicities, although Black (17%) and Asian (25%) females had higher levels of response than males.

Only 37% of respondents did not know that they could go abroad for planned healthcare funded by the NHS prior to the survey. Of this group of respondents, only 59% stated they would now considering going abroad. Of the entire sample (n=1004), only 22% who were previously unaware of the healthcare abroad option reported they would consider it an option now they are aware. Considering demographic make-up, the highest percentages of individuals who would consider healthcare abroad, having previously being unaware prior to

Section 4 27

the survey, were found in the younger age bands of 18-24 (79% of women and 63% of men) and 25-34 (70% of women and 76% of men). Therefore, the numbers of individuals who would consider healthcare abroad are fairly low.

4.2.5 Participants who travelled abroad to receive planned healthcare

The entire sample was asked if they had travelled abroad with the primary reason to receive healthcare treatment. Only 7 (less than 1%) individuals out of the entire sample had previously travelled abroad with the primary reason to receive planned healthcare funded by the NHS.

Of those 7 individuals, 4 were treated in EU countries, whilst 3 were treated in non EU countries. All of the 7 individuals were female, 4 of whom fall into the age bands of 35-44 and 45-54. 4 of the individuals were White British (58%), 1 being White European, 1 being White Other and 1 Asian other. We requested information of how their healthcare abroad was funded and found that 5 used private payments, 1 used personal health insurance and only 1 used the NHS as a funding source. This further indicates the very low demand on the NHS for funding services abroad. The individual who received healthcare abroad funded by the NHS was a White European female aged 35-44, and stated she sought healthcare abroad as she wanted to feel more at home in her own county. She sought funding before travelling and did not recall whom they directly approached when initially trying to obtain funding.

The 7 individuals were asked about their reasons and motivations for seeking planned healthcare abroad. Table 4.10 presents the all of the responses which are not exclusive and overlap. Perceptions of healthcare services abroad being of a higher quality was a motivation for 2 individuals, and the cheaper cost of healthcare abroad was also a motivation for 2 individuals who paid privately. Other reasons provided included the inability to receive treatment in the UK and concern about the cleanliness of UK hospitals. When comparing these reasons to those of individuals considering going abroad for planned healthcare (table 4.8), there are many similarities. Cost motivations such as cheaper services abroad and an inability to afford private healthcare are present in both types of responses. Dissatisfaction with current healthcare provider and perception of better medical facilities abroad were also common in both types of responses. The individual whom sought healthcare abroad because they could not receive treatment in the UK was a White British female aged 65-74. These results confirm the apparent key motivations for going abroad for planned healthcare, being cost and perceptions of higher quality of and quicker care abroad.

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Table 4.10 Reasons for going abroad for healthcare (Base 7)

Reason n %Perceived higher quality of services abroad 2 29Was cheaper to go abroad 2 29Could not receive treatment in UK 1 14Concerns about cleanliness in UK hospitals 1 14Fell ill on holiday 1 14Felt more comfortable in own country 1 14

The individuals were asked about their methods of selecting healthcare providers abroad. Table 4.11 presents the results of this inquiry, indicating the internet and recommendations from friends or families to be the two most frequent methods of selecting healthcare providers. One individual who used the internet recalled it to be a people logistics website. Other individual reasons were provided such as already being acquainted with the consultant/facility or already receiving treatment at that facility.

Table 4.11 Methods of selecting healthcare providers (Base 7)

Method of selection n %Internet/website 2 29Recommendation from friend/family 2 29Intermediary healthcare broker (insurance for holiday) 1 14Already acquainted with consultant/facility 1 14Already receiving treatment from consultant/facility 1 14

Out of the 7 individuals who travelled abroad for planned healthcare, 6 travelled only once whilst 1 individual travelled twice for services on the same condition. When asked if they consulted their UK GP after their treatment abroad, 1 person did whilst 6 did not. Similarly, when asked if they were happy with the treatment they received abroad and whether they would consider doing it again, 6 individuals stated they were satisfied and would consider it again, whilst 1 individual was very dissatisfied and would not consider it again. No reason was provided for this dissatisfaction. This clearly appears to be an individual with a negative experience, yet in all other cases there appeared to be no problems or causes for complaint.

With only 7 individuals out of a 1004 member sample (stratified in line with characteristics of Treatment Abroad respondents and recipients of E112s) having previously travelled abroad for planned healthcare, there appears to be a very low volume of individuals using this service.

4.2.6 Children of participants who had travelled abroad to receive planned healthcare

The entire sample of participants was asked whether their children had travelled abroad for planned healthcare, out of which only 4 children had travelled abroad for planned healthcare. Of those 4 children, 3 were treated in the EU (2 in Spain, and 1 in Hungary) and 1 treated in a non-EU country. Treatment for 2 children was by private payments; the parents did not attempt to use an EHIC card or seek funding from the NHS. The other 2 children were

Section 4 29

covered by the NHS and funding was sought before travelling. The reasons or motivations provided as to why the children travelled abroad for healthcare were individual and contextualised to each individuals personal circumstances, as shown in table 4.12. Again, as with reasons provided by participants who had travelled abroad, the inability to receive treatment in the UK was a reason provided as to why the child sought healthcare abroad. In this particular case, a 3D scan was required which is not currently available on the NHS. The reason of combining the treatment with a holiday is also consistent with the advantages reported for receiving healthcare abroad.

Table 4.12 Reasons for taking child abroad for healthcare

Reason n %Christmas holiday 1 25Treatment did not work in UK 1 25Could not receive treatment in UK (3D prenatal scan) 1 25In the army 1 25Total 4 100

The methods of selecting healthcare providers for children arose out of individual circumstances (table 4.13). There are similarities between the methods presented here and those provided by adults who received planned healthcare abroad, such as already being acquainted with the physician or facility.

Table 4.13 Methods of selecting healthcare providers for children (Base 4)

Method of selection n %Already acquainted with consultant/facility 1 25Other UK healthcare provider- BUPA 1 25Army 1 25Original Dr in Spain 1 25Total 4 100

However, the number of times the participant’s children travelled abroad for healthcare differs from those provided by participants. Two children travelled abroad only once for healthcare, whilst one child travelled twice and another travelled 5 times or more, both for the same condition. 2 participants stated they were ‘very satisfied’ with the services they received and the other 2 participants stated they were ‘satisfied’ and all would allow their children to travel abroad again for treatment.

4.3 SUMMARY AND DISCUSSION

4.3.1 Awareness of NHS funding for unplanned and planned healthcare

The results of the survey indicate there is a high level of awareness of the EHIC card and its use when receiving unplanned healthcare abroad. Of the 9 individuals who received unplanned healthcare in the EU, 8 used an EHIC card, implying effective strategies of advertising and implementation of the system. Although awareness of NHS funding for

Section 4 30

planned healthcare abroad was reported by more than half of the sample (n=624), more than half of the entire sample were unaware of where to seek information on this service (n=637). The extent and range of mediums suggested by participants as to where they would seek advice for planned healthcare abroad implies a lack of a clear advertised pathway for this service. The most frequent response was to consult general practitioners who are not formally a part of this programme nor is it guaranteed they possess the correct information to supply to interested patients.

4.3.2 Perceptions of planned healthcare abroad funded by the NHS

The number of individuals whom had previously considered planned healthcare abroad comprised a very small proportion of the stratified sample (n=45), indicating either little interest, lack of awareness, or lack of knowledge as to how to arrange the service. Reasons for considering healthcare abroad were centred on primary themes: cost (inability to afford private healthcare and cheaper services abroad) and dissatisfaction with NHS services (perception of higher quality of services and facilities abroad and problems and waiting times). The two reasons are interrelated; the inability to afford private healthcare as a motivation stems from a desire to seek healthcare outside of the NHS, implying a dissatisfaction services currently provided by the NHS. Yet the number of individuals whom had previously considered healthcare abroad as an option is small, indicating little effect on the NHS.

More than half of the sample stated they would consider planned healthcare abroad in the future (n=622) indicating a reasonable level of interest in the service. Further to this, more advantages of receiving healthcare abroad (n=1196) were reported than disadvantages (n=1123). The most frequent advantages reported relate to the motivational factors of participants previously considering planned healthcare abroad, that of dissatisfaction of NHS services and the associated cost of seeking private healthcare. Dissatisfaction was of greater importance within the reported advantages with 50% of the sample reporting avoidance of waiting times to be a primary advantage. However, a substantial number of disadvantages were also reported including the inability to have family close by (28%), language barriers (21%) and the need to travel (21%). Therefore although a reasonable level of interest was reported towards planned healthcare abroad in the future primarily motivated by dissatisfaction with NHS services, a sizeable proportion of disadvantages were also reported. 70 individuals also stated they were happy with the services they currently receive on the NHS.

Only 37% of the sample was unaware of the services offered by the NHS for healthcare abroad prior to the survey. Of this 37%, only 59% stated they would consider using the service in the future. Therefore, of the entire sample (n=1004), only 22% of individuals who were previously unaware of the healthcare abroad option reported they would now consider it to be an option, so very little conversion of interest took place. With such small individuals registering their interest, and with such a large amount of reported disadvantages in relation advantages, there is little concern to be drawn.

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4.3.3 Participants whom had previously received planned healthcare abroad

Of the entire sample, only 7 participants and 4 children of participants reported they had previously received planned healthcare abroad. Further to this, only 1 participant and 2 of the 4 children used NHS as a primary source of funding for the healthcare they received abroad. Again, this implies minimal burden to the NHS, with such small numbers being reported to use this service out of our1004 member stratified sample

The reasons for this small number of individuals seeking planned healthcare abroad echo those reported as motivational factors for considering healthcare aboard and the reported advantages of this service. Dissatisfaction with NHS services and costs were equally reported as reasons for seeking healthcare abroad. For the participants’ children, a greater emphasis was placed on the inability to receive the necessary treatment within the NHS and other personal circumstances. The small numbers being reported of individuals travelling abroad gives little cause for concern.

4.3.4 Characteristics of sample- who travels abroad for planned healthcare?

As previously stated, the sample used in this study was selected on the basis of characteristics similar to individuals in the Treatment Abroad study and recipients of E112s. However, the ethnicity of individuals who have travelled abroad for planned healthcare is unknown, as no formal recording has been made. Although responses from either gender were found to be fairly equally consistent throughout the survey, the frequency of some factors were greatly influenced by age and gender.

AgeFindings indicate awareness of planned healthcare increases with age, as 73% of 270 individuals aged 55-64 and 61% of 270 individuals aged 45-54 were aware of planned healthcare abroad in comparison to 27% of 22 individuals aged 18-24 in the sample. . However, in terms of accessing information regarding healthcare abroad, a high proportion younger individuals (in 18-24 and 25-34 age bands) reported the internet to be their first port of call. Although this is reflective of the younger generations inauguration and familiarity the technology and the digital age, there is a lot of comprehensive information regarding NHS funded healthcare abroad, therefore the younger individuals report a more fruitful method of accessing information, as opposed to the middle aged groups who reported a doctor to the first port of call.

Therefore it is indicated that middle aged white groups are more aware of NHS funded healthcare abroad, yet younger individuals have a greater grasp of accessing comprehensive information on the service. In terms of perceived advantages of receiving healthcare abroad, the avoidance of long waiting lists was a view held primarily by middle aged individuals falling into age bands 35-44 and 55-64, which is typical of the Treatment Abroad sample. Whilst the perception of better quality facilities and care abroad was more frequently held by younger age groups, which may indicate younger individuals perceive the NHS as providing a lower quality service, whilst the main concern. Further to this, higher

Section 4 32

percentages of previous consideration towards healthcare abroad were found in the younger age bands of 18-24 (9%) and 35-44 (7%) compared to individuals aged 55-64 (3%). This implies that individuals who fall into middle to elderly age bands are more aware of the service, but younger individuals have greater access to knowledge and overall are more willing to consider travelling abroad for healthcare.

EthnicityIt was also found that knowledge of healthcare abroad appeared to be limited among people from different ethnic backgrounds. However high frequencies were reported of individuals from ethnic backgrounds whom had previously considered healthcare. Therefore, although awareness is recorded to be low among individuals from ethnic backgrounds, willingness to travel abroad and receive planned healthcare is high.

4.4 COMPARISON OF SURVEY FINDINGS WITH FLASHBAROMETER FINDINGS

The survey, conducted in May 2007, was carried out with citizens in all 27 member states. 1,007 interviews were undertaken with UK citizens. In the EU survey, on average 4% of citizens received medical treatment outside their national borders in the previous 12 months (with a range of 2%-8%, and Luxembourg as an outlier at 20%). According to the EU survey 3% of UK respondents had travelled abroad. The EU survey did not differentiate the mechanisms for receiving treatment abroad. Our survey found that 17 individuals received healthcare abroad whilst living and working abroad, 9 received unplanned healthcare whilst travelling abroad, and 7 travelled abroad for planned healthcare. In total, therefore 32 of our respondents had received healthcare abroad, equating to 3%, and thus matching the EU survey results.

The EU survey investigated whether citizens would be willing to travel to another EU country to receive medical treatment. The responses ranged from 88% of Cypriots down to 26% of those from Finland. 54% of those from the UK indicated that they would be willing to travel. According to our survey, 62% were aware that they could travel abroad to receive planned healthcare funded by the NHS, but only 4% had considered going abroad for planned healthcare. This group appeared to be a younger age-group, which accords with the EU findings that willingness to travel for healthcare decreases with age, and increases with educational attainment. The EU survey looked at correlations between a series of questions (assumptions that such treatments are covered by regular health insurance, previous experience of treatment elsewhere in the EU, and preparedness to travel abroad for treatment), and found that there is no relation between any two of the three factors, suggesting that the answers do not reflect well established attitudes.

The EU survey asked respondents about factors that might motivate them to obtain health services outside their country. They found that the major reason was the inability to receive treatment in their home country (95% from UK; 91% EU average), followed by an expected better quality of treatment (81% from UK; 78% EU average), to see a renowned specialist

Section 4 33

(88% from UK ; 69% EU average), to receive treatment more quickly than at home (86% from UK; 64% EU average) and to receive cheaper treatment than at home (66% from UK; 48% EU average). Higher percentages of UK citizens identified these factors across all factors (including the comment on cheaper treatment, which is a little surprising given that NHS care is mostly free; respondents were possibly commenting on private healthcare). These factors are those that were identified by respondents in our survey. However, whilst the EU survey prompted with factors, our survey did not.

The EU survey also asked about factors that discouraged citizens from obtaining treatment elsewhere in the EU. 86% of EU respondents said it was more convenient to be treated near home( 98% of UK respondents), 83% said they were satisfied with the healthcare they could receive at home (86% of UK respondents), 61% said they did not have enough information about the availability and quality of medical treatment abroad (70% of UK respondents), 49% gave language reasons (64% of UK respondents), and 47% said they could not afford to receive medical treatment abroad (59% of UK respondents). Again, higher percentages of UK respondents identified these factors especially that of convenience, and again these factors were identified by respondents in our survey.

Therefore overall, the findings from our survey accord broadly with those from the EU survey. Consistent messages from across all EU countries are that whilst many might consider travelling outside their country to receive healthcare, small numbers do, and neither our survey, nor the EU survey, suggests that the numbers are likely to increase. Motivating factors and barriers were also similar across the surveys, with UK respondents to the EU survey identifying convenience and the desire to be treated closer to home as the main barrier for not travelling abroad.

Section 4 34

Section 5: Focus Groups with members of the general public

Key findings Experiences of healthcare abroad and in private facilities in the UK, were excellent;

those who had used these facilities praised them highly, including the quality of the staff and clinical outcomes. None had aftercare problems, nor made complaints;

Experiences of NHS healthcare ranged from excellent to very poor. Excellent care seemed to be of the specialist nature, although many participants said they had received good quality NHS care. Participants had made complaints or had serious reservations about the quality of some care received;

Expressed concerns about the NHS were three-fold: quality of staffing, particularly nursing, where staff appear to be rushed and unable to give more personal attention to patients and basic needs; levels of cleanliness and the risk of hospital acquired infections; and the length of waiting times, where waits of 6 – 18 weeks (within DH guidelines) were seen as too long;

Many of those who received healthcare abroad made use of family connections, which seemed a significant driver. Those who did not have family connections appeared to undertake research successfully via the internet;

Reasons for seeking healthcare abroad were associated with waiting times, receipt of what they perceived to be better quality care, or receipt of private health care in a country where costs were lower than in the UK;

Those who sought private healthcare in the UK were concerned mostly about waiting times;

The majority of participants might consider seeking healthcare abroad for similar reasons for planned diagnostic tests or minor surgery, or to receive treatments that were not available in the UK;

Participants were not wholesale in favour of seeking healthcare abroad: there were concerns about what to do about aftercare and complications. Reservations were expressed about going abroad for major surgery;

Many had received dental care successfully abroad, both planned and urgent. Interestingly, the group was divided as to whether they would seek dental care abroad; aftercare was again a concern;

Many said they never thought of seeking healthcare abroad, but might consider it now, given their increased awareness of the possibility as a result of participating in the project.

Section 5 35

5.1 INTRODUCTION

Focus groups have been held with a sample of individuals who participated in the public survey and whom had either received healthcare abroad, or who had expressed an interest in travelling abroad for healthcare. The purpose of the Focus Groups was to investigate in more depth the views of people about receiving healthcare abroad, and under what circumstances they would wish to seek such care.

5.2 PROCESS FOR RECRUITMENT AND MANAGEMENT

Potential participants were recruited by QA Research, who had arranged and undertaken the Public Survey. Two groups of individuals were identified: those who had received healthcare abroad and those who had expressed an interest in travelling abroad for healthcare.

Those who were had received Healthcare abroad were defined as those who had provided a positive response to the following questions in the Public Survey:

Q2: Those who had received planned healthcare whilst living abroad;Q4: Those who had received unplanned (emergency) healthcare whilst travelling abroad;Q11:Those that have received planned healthcare in a European country in the past 12 monthsQ18: Those who had travelled abroad (anywhere outside the UK) with the primary intention of receiving planned healthcare. Including those who had travelled abroad in order for their child to receive treatment.

Following de-duplication (where individuals who may have provided more than one response), we were left with 32 individuals. Broken down as follows (note: age-band relates to age and gender of parent, not child).

Age band20-29 30-39 40-49 50-59 60-69 70-79

Grand TotalGender

Female 2 3 4 6 3 1 19Male 0 0 3 1 7 2 13

Grand Total 2 3 7 7 10 3 32

Those who had considered receiving Healthcare abroad were selected from those individuals who had provided a positive response to the following question in the Public Survey:

Q36: Have you previously considered travelling abroad to receive healthcare (before respondents were told about the possibility of receiving healthcare abroad through the NHS).

Section 5 36

Following de-duplication (where individuals who may have responded to going abroad to receive unplanned healthcare were removed), we were left with 42 individuals. Broken down as follows:

Age band20-29 30-39 40-49 50-59 60-69 70-79

Grand TotalGender

Female 1 2 11 7 6 0 27Male 1 3 1 3 6 1 15

Grand Total 2 5 12 10 12 1 42

All of those individuals who had received healthcare abroad were contacted. They were sent a letter prior to being contacted direct by telephone, with details of the groups and why they were being asked to take part in the groups (although this was done in waves to minimise the possibility of over recruitment). For those who had considered receiving healthcare abroad, some individuals were not asked to take part in the groups, as the quota had been filled.

Out of the 32 individuals contacted, who had received healthcare abroad, nine accepted, one of whom later dropped out, six could not be contacted, and 17 refused. Out of the 42 individuals who had considered healthcare abroad, 17 accepted, of which five later dropped out, six could not be contacted and four refused. Fifteen were not contacted.

Those who wished to participate were given more details of the Groups, including topics for discussion. Participants are only known to QA, with whom they agreed a name or pseudonym which they used in the Focus Group. Participants were sent a gift voucher as a thank you for participating.

All groups were managed through a free phone conference call, facilitated by a member of the research team who has a clinical background, and is experienced at working with patient focus groups, and with giving patients information about treatments. The calls were recorded to aid with subsequent analysis. Participants were informed of this when invited to join the group. We ran four focus groups, one in the week of 12th and three in the week of 19th April.

5.3 ANALYSIS OF PARTICIPANTS

Twenty two people were recruited. One person informed QA prior to the Group that they could not attend and were replaced. Two people did not call in on the appointed day/time. Twenty people finally participated in the Groups.

Participant details are shown in table 5.1

Section 5 37

Table 5.1 Participants by group topicGroup topic Received

healthcare abroadConsidered

healthcare abroadTotal

participantsAfternoon group 3 6 9Evening group 5 6 11Total participants 8 12 20

The age and gender breakdown are shown in tables 5.2 and 5.3.

Table 5.2 Participants by age and by group topicAge group 20-29 30-39 40-49 50-59 60-69 TotalReceived healthcare abroad

0 3 1 3 1 8

Considered healthcare abroad

1 1 4 2 4 12

Total participants 1 5 5 5 5 20

Table 5.3 Participants by gender and by group topicGender Male Female TotalReceived healthcare abroad

1 7 8

Considered healthcare abroad

3 9 12

Total participants 4 16 20

Table 5.4 shows the geographical distribution of participants.

Table 5.4 Geographical distribution of participantsGeographical location Number of participantsScotland 1North of England 1Midlands and East of England 4London 1South and South East of England 9South West of England 4Total 20

The age structure of those that have received healthcare abroad is slightly younger than the group that considered healthcare abroad. The age structure of those receiving healthcare abroad in our survey was younger, as they included those working abroad and on holiday as well as those that had chosen to travel abroad. A greater proportion of women have participated, and the South of England has a higher representation. Therefore the participants in the Focus Groups are not representative of our Public Survey sample. However, we have no evidence to suggest that these apparent biases in the sample will affect the opinions and the information that we have derived from the Group discussions.

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5.4 TOPICS FOR DISCUSSION

Although we expected that the focus groups would discuss issues that mattered to the participants, we drew up a list of topics that we wanted the group to discuss. Those for the groups who have received healthcare abroad are shown in box 5.1.

At the beginning of the Group, participants were asked to introduce themselves (using their chosen name) and briefly explain what treatment they (or their family member received), where they received their healthcare, and why they received your healthcare abroad (rather than in the UK). They were also asked to describe who paid for the healthcare (whether it was NHS funded, whether they paid, or whether their insurance or employer insurance paid).

Box 5.1 Topics for discussion in Focus Groups of those who have received healthcare abroad

We would like to know what your experience of the treatment was like, for example what did you feel about the quality of your treatment, of the staff and the facility.

We would like to know how did you feel about the process of obtaining your healthcare, for example, finding out about the facility and the surgeon or physician, communicating with them before and after the treatment, and whether you have had any on-going contact. Who helped you find your way through the process?

Did you have any subsequent problems or complaints, and how did you resolve these? What was your experience like re-entering the NHS? Did you encounter hostility, or have

any problems, for example from your GP, dentist or other clinicians? How did your experience of healthcare abroad compare to treatment you have received

in the UK, and in the NHS or other private facilities. Given a choice, would you seek healthcare treatment abroad again? Why and under

what circumstances. What might the barriers be? Is there anything else you want to tell us…?

The topics for discussion for participants in those groups who have expressed an interest in receiving healthcare abroad are shown in box 5.2.

At the beginning of the Focus Group session, participants again were asked to briefly introduce themselves and describe what hospital (inpatient or outpatient) treatment or what dental treatment they (or a family member) have received in the UK. They were also asked whether the healthcare or dental care was under the NHS or in a private facility, and if in a private facility, who paid for the healthcare (whether it was NHS funded, whether they paid, or whether their insurance or employer insurance paid).

Section 5 39

Box 5.2 Topics for discussion in Focus Group of those who have expressed interest in receiving healthcare abroad.

We would like to know what your experience of the treatment was like, for example what did you feel about the quality of your treatment, of the staff and the facility.

You have expressed an interest in receiving healthcare abroad. For what conditions would you consider travelling abroad for healthcare, and under what circumstances?

What concerns do you have about the NHS, or private healthcare in the UK that would lead you to consider healthcare abroad.

Would you seek healthcare funded by the NHS or funded by insurance or privately. We would like to know the experience of you/your family in receiving dental care. Are

you registered with an NHS dentist, or a private dentist, and did you have any problems in finding a dentist. Have you considered going abroad for dental care?

How and where would you find out about getting healthcare abroad, including dental care?

Have you discussed receipt of planned healthcare, including dental care, with your GP or dentist, with your healthcare commissioner/pct, or with another person or organisation? Have you discussed with friends or family. What information did you receive and what was their advice.

Is there anything else you want to tell us…?

5.5 FINDINGS

5.5.1 Healthcare received abroad

Although, according to our survey information, eight of the participants (or a relative) had received health care abroad, we discovered that a further three people had also received care abroad, one of whom also bought their medication in mainland Europe.

Table 5.5 summarises the health care received abroad by our focus group participants26.

26 NB The names of all participants have been changed from those used in their Focus Groups to ensure anonymity: it is possible that individuals used their own forenames for Groups.

Section 5 40

Table 5.5 Summary of treatment received abroad by focus group participantsParticipant Country where

healthcare received

Urgent/Planned care

Funding Condition treated

Dennis (daughter –in- law)

Hungary Planned Family live in Hungary: on their health care scheme

Ante-natal 3-d scan

Tina Netherlands Planned Husband in military: free

Obstetric care

Rosemary South Africa Planned Private Facial cosmetic surgery

Lyn Morocco Urgent Travel insurance Reaction to antibiotics

Jill US Planned Family live in US: private

Dental extraction

Wanda and children

Spain Planned Family live in Spain: on their health care scheme

Annual checkups for her and children

Josie Tunisia UrgentPlanned

Company insurancePrivate

Crohn’s DiseaseDental bridge

Nancy France Planned/Ongoing

Family live in France: on their health care scheme

Chronic back pain

Carol Brazil Urgent Travel insurance Septic insect bites

Doug

Wife

Spain

Cyprus

Planned

Urgent

Private

Travel insurance

Purchase medicationFood poisoning

Jessica South Africa Urgent Travel insurance Dental care

The majority of conditions described above are unsurprising, including two obstetric cases, three dental cases, and problems experienced on holiday. Eight of the participants had chosen to travel abroad for healthcare, including two for dental care. Of interest is the number that use healthcare in the country where their family live through their healthcare arrangements.

5.5.2 Healthcare received in the UK health care

All 20 participants had experience of UK NHS healthcare, ranging from ongoing treatment over many years for serious conditions usually in specialist facilities, to occasional use of A&E facilities, minor operations and visits to GP practices. They also had experiences of close relatives’ receiving healthcare. Seven of our participants had healthcare insurance and had used private healthcare facilities in the UK. One also had a child whose grommets were inserted privately, to avoid a waiting list; “he was very deaf, so we paid to avoid a long waiting list”. Two more paid for surgery in the UK, using bank loans. One chose not to have the procedure on the NHS, although the plastic surgery required was a by-product of their ongoing NHS treatment: ”I didn’t want to burden the NHS…it was cosmetic and I didn’t need it…so I paid for it…I was selfish”. A second described how her husband needed an operation

Section 5 41

on his spine, but faced with an 18 month waiting list and the need for fast treatment (he ran his own business and could not afford to be incapacitated); they too took out a loan to pay for private care. The operation was done within two weeks.

5.5.3 Comparative views of experiences.

Experiences

Participants were asked their views on their healthcare experiences. All were very positive about their experiences of their healthcare abroad. They used words such as excellent, brilliant, amazing and superb. They all spoke of excellent facilities, staff who could speak English well, and well organised processes. Doug, whose wife was rushed to (a private) hospital by a doctor, with food poisoning was fulsome in his praise “the doctor took her in his car…they treated her like a queen”. Tina, who had a baby in a hospital in the Netherlands, said that “the actual labour was long and awful, but the care received was amazing and the aftercare was excellent”. She also commented that gas and air and pain relief appears not to be the norm in the Netherlands for child birth, so she did not receive any. She also commented that, “although the care in the Netherlands was brilliant, they would talk between themselves in Dutch and I didn’t know what was going on”. Lyn commented that her care in a hospital in Marrakesh was “excellent [in a] well equipped clean hospital”. These experiences seemed to apply to planned and emergency care. Similar comments were made about private care received in the UK. None reported having clinical problems, problems with aftercare, or having to make a complaint about any aspect of their care.

Experiences of NHS care varied dramatically from the excellent to the poor.

Tessa, who has had 26 years of medical care, stated that “I have had nothing but fantastic treatment from the NHS – maybe it depends where I live. Have a fantastic local hospital”. Harriet, who had a hip replacement in an NHS-run military hospital said that “her operation went OK”; although she felt that the military staff were better than the NHS staff. Doug, whose granddaughter has chronic lung disease, praised the care received in the paediatric ICU at his local hospital “[it] was fabulous”. Rosemary had gynaecological surgery, which she “couldn’t fault”, One of her children, having had grommets inserted privately, had them done a second time, but in the NHS. She said that “the second time had it done; it was done quickly on the NHS. [we had] no complaints about the length of wait, nor the treatment – they were all excellent”. Finally, Tanya who was happy with the care she received did comment “my only concern was that they tried to get me out of hospital too quickly…I wasn’t up to coming home so quickly, as I only had my mother at home and didn’t think she could look after me properly. I asked to stay another day and they said no”.

On the other hand, Doug, who has had multiple orthopaedic operations, and who is waiting for a further hip replacement said “the local hospital is disgusting...I am dreading going into it”. Jessica’s husband, who had a neurological problem, went to a local hospital for an infection “[he was] treated abysmally. I threatened to take him and his bed home, he was treated so badly”.

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John, who is being treated for cancer, contrasted the care he received at his specialist hospital: “the facilities are brilliant…the staff are brilliant, any problems they will console me, they help me with anything” with care at his local hospital “the staff are rushed at [name of hospital]; they don’t have time to tell you what’s going on”. However, he is full of praise for his local pain management team, and the local hospice.

Views on the state of the NHS also varied. Participants mostly commented on three aspects: the staffing, the level of cleanliness and related infections, and waiting times.

Views about staffing

Participants expressed concern at what they perceived to be “the lack of professionalism in nursing”. They believed that nurses did not seem to care for their patients, that they were very rushed and did not spend enough time, or forgot patients. One commented that her husband “was allowed to fall out of bed and broke his nose…I felt the nurses did not care” , another that “they don’t care now...a different group of people go into nursing now…nursing standards have dropped” (this participant had been a nurse). ”. Vicky commented that, after having surgery, “I felt the nurses were lazy. One evening I hobbled out and found the nurse on duty ordering her Christmas presents on-line….they say they will see you in a minute and you have to wait….I had to phone a friend to get them to bring up paracetemol from the local chemist”. She also believed that “there are two standards...specialist nursing is better...since we have changed nursing skills and how they are trained…people may be in nursing for the money…they may not want to be in nursing for love”. Jessica explained that she had told the staff that her husband was very ill, “they wouldn’t let me stay with him. He needed 24 hour nursing care and they couldn’t or wouldn’t give it to him, they were too busy. I took him home the next day; I wouldn’t let him stay there.”.

Not all participants were so critical; many felt that staffing levels appeared low, and that nurses were doing their best but were very rushed and stressed. For example, Rosemary observed that, “the staff were stretched to the limit...if there was anything out of the ordinary, like a diabetic lady on my ward with major problems...they dedicated their time to her. So if they had another major problem, they would have been very stretched”. Many commented on the role of matrons, and how matrons used to ensure quality care on wards. As Doug believed, “when matrons were scrapped, care declined…now matrons are back, it may improve”.

Those who had received healthcare abroad or in private hospitals generally compared unfavourably the level of nursing care received in NHS facilities with those in private hospitals or those abroad. However, they did mostly acknowledge that, if you paid for healthcare, you probably did get more attention to detail.

Few commented about doctors, most comments about senior medical staff were favourable, believing that medical care in the NHS and the private sector were comparable. As one participant observed, “they were probably the same doctors”. Graham related the experiences of not being seen by his consultant in the NHS. He normally receives private healthcare (having healthcare insurance), but began receiving care for his diabetes two

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years ago in the NHS, as his insurance does not cover chronic conditions. He has been to the eye clinic of his local hospital numerous times. Once he was seen “by a person shipped in from Cyprus who couldn’t speak English”. On a second occasion, he was seen by a doctor from Greece. “Because it was late in the afternoon, I saw her stand in front of an elderly patient…and demanded that the sister sign her pay sheet, because the last time she worked after 4.30 she didn’t get paid. I am not impressed by their view of a caring profession”. Another participant expressed concern about the quality of care he had received from a junior doctor whom he did not think was competent to draw fluid from his knee, as he seemed to making a mess of the procedure.

Participants also had positive and negative comments about GPs. Many were very happy with their GP practice. Josie said “I can’t knock my GP…fantastic...a big practice. I have never had a complaint about my GPs, but it’s like a lottery, is good and bad.” Others were less complementary; for example “I call my doctor Mr Penicillin as that is all he offers”. Wanda, on explaining why she seeks health care in Spain described the problems she has had with persuading her GP that her son’s illnesses (respiratory complaints and headaches) were serious: “My GP says ‘Oh he’s growing...nothing to worry about…come back in six months and let me know’. I can’t wait six months. It was the same when his asthma started…I don’t understand why it is so difficult to see a specialist. You almost have to go on bended knee”. Nancy, who has received healthcare in France, said “I am reluctant to go to the GP …they usually offer a prescription…what’s the point?”

Views about cleanliness

Those that had received private healthcare or healthcare abroad were normally fulsome in their praise of the facilities and the cleanliness.

Participants were mostly very concerned at the level of cleanliness in NHS hospitals. Many had stories about friends or relatives who had caught hospital acquired infections. Doug, who has used his local hospital for many years, and also worked for the NHS, believed that “cleanliness seemed to go down when they started to go out to tender...when a private company do it, they are not properly trained and paid minimal wages. If their own team did it – it’s about pride. Now it’s all about money. If paid cleaners more...it would be better...private companies don’t deliver”. Rosemary said “you hear about MRSA constantly…it’s the only thing that bothers me”. Daryl commented, “I have grave reservations about healthcare in NHS. A friend went in for a minor operation (hernia)…they caught MRSA, and have been in and out of hospital for 12 months. It’s a disgraceful way to treat someone”. Doug described seeing hair in the bath, and explained how a friend went into hospital for a minor operation, caught an infection and died. “I have heard that hospitals abroad are much cleaner”. Wanda, who goes to Spain regularly to receive care believes that “the hospitals are cleaner in Spain …they are quite horrendous in the UK”.

Comments were also made about the buildings and facilities, for example, “there was more scrap metal in my ward than in a tinker’s yard (frames and wheelchairs etc)…there were six of us in the room trying to walk”. Vicky believed “if you go to the private wing of your local hospital, it’s like going from third world to a posh hotel”. Tammy said, commenting on the

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private hospital in which she received some tests, “The private hospital looked cleaner – it looked more like a hotel. The reception was good, the bed space was lovely”. Graham, of his local hospital said “it is 30 years old and is falling down…it is not mistreated, but just don’t think people care down there. If the building is falling down, what chances have the patients?”

Views about waiting times

Our participants had all experienced receiving urgent care and planned care. Urgent care in the NHS was both complemented and criticised. Ambulance services were seen in a positive light, no-one commented on having to wait for an ambulance to arrive, for example “my husband collapsed and I called an ambulance. It arrived quickly”.

A&E services were not so well received. For example, Tanya explained how, as a result of living in a village, she is some 30 miles for an A&E department: “My mother broke her wrist recently…had to travel 30 miles to get an x-ray as the local hospital doesn’t do A&E. [X hospital] couldn’t find a break in her wrist and she is now waiting two weeks for an MRI scan. But her wrist is swelling up like a balloon”. Other comments included: “I am unhappy about A&E, I have waited a long time in A&E” or “Our local A&E is a place for drunken people to go...a lot is about the clientele and the situation”.

A common reason for seeking private healthcare in the UK was the waiting times for diagnostic testing or surgery. Tammy explained, “I had had a liver function test and there was a problem. They wanted me to see a specialist. There was a six to eight week wait for a proper scan on my liver, so I went private. I was so worried I opted for private...The results were OK”.

Other participants were more sanguine about waiting times. Tessa described how she had to wait for her surgery, “I had to wait more than 12 weeks for one lot of surgery…it was reasonable, I was not at death’s door. The only time I had to wait was when I needed two separate procedures under a single anaesthetic…I had to wait for two surgeons to be available together and I waited six months. I was still happy with this, I had excellent care”.

5.5.4 Dental care

Participants were asked to describe their experiences in respect of dental care both in the UK (NHS and private) and abroad. Some participants had dental plans, and others received NHS and private care, or solely NHS care. Some had minimal experience of dental care. As with other aspects of their healthcare experiences, experiences of dental care were very mixed. As seen in table 5.5, three participants received dental care abroad.

Jill, whose family lives in the US, has lived in the UK for 12 years, broke her tooth and could not find a dentist. “I went to see the GP and he said good luck, it is very difficult to find a dentist. He gave me antibiotics. Where the tooth was broken, he said you would be OK. I was not happy with this and I went door to door to local dentists. One that I was happy about said I could not have an appointment as they were fully booked. I had made plans to go back

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to the US and via my family set up an appointment with a dentist in the US. The dentist pulled out the broken tooth and said I shouldn’t have left the tooth in”. Jill paid for her dental care privately. She explained further, “I went back to the GP for something else. He remembered me and gave me the name of a dentist. I went down and met the dentist who took me on as a patient. He told me he will see me every six months. After six months nothing happened…. After one year, nothing happened. So I went back and asked what I should do. He said, ‘we are so far behind, come in and make an appointment’ He seems OK, a clean little office, I have no complaints, but he must be inundated with patients”.

Josie went to Tunisia on holiday and whilst there had a dental bridge fitted, which would have cost her £3,000 in the UK, but cost £300 in Tunisia. She commented, “it wasn’t dirty...it wasn’t modern…but it was OK. They knew what they were doing and did a good job. I would go back”. Like Jill, Josie paid privately for the dental care. Jessica needed emergency dental care when she was on holiday in South Africa. She commented, “It was fantastic. They even sent me digital images of my tooth to my home address…My dentist doesn’t even have a digital camera. I would definitely go to South Africa for dental work. I had a big root canal filling...it was only £79, it would have been several hundred in the UK”.

Carol went on the internet to find an NHS dentist. Fortunately a new dentist advertised for patients locally, and she was able to get registered. She was unhappy with her previous dentist, “I had treatment with one dentist, which led to having the top set of teeth removed. It was painful...it was done in an uncaring and unfeeling way. I was frightened of going to the dentist. The current one treats you as a person, not just as a mouth. I never thought of going abroad”.

5.5.5 Reasons for seeking healthcare abroad or in the private sector in the UK

Here we are only focusing on those participants who planned to receive health care abroad or in the private sector. The reasons given were very similar, relating to personal circumstances, normally having family in another country, problems with accessing care in the NHS, for example due to longer waiting times, or with cost.

Two participants described experiences with obstetric care. Dennis’s daughter-in law went to Hungary to get a 3-D scan. She prefers the healthcare in Hungary, and can access it easily having family living there. He said, “she was not impressed by the experience of the birth of her child at the NHS hospital”. Tina’s husband was in the military, and she had her first baby in the Netherlands, and the second in the UK. Jill described receiving dental care in the US, which was arranged by her family, using a dentist known to them, because she could not find a local dentist that she was happy with. Wanda and Nancy have both received healthcare through their families in Spain and France respectively, in part they were not happy with the care being received in the UK, and also because they could benefit from the healthcare arrangements of their family.

Rosemary travelled to South Africa for cosmetic surgery, which would not have been available on the NHS. The cost in South Africa was much cheaper than the equivalent cosmetic surgery in the UK. She chose South Africa, because she had family there, a cousin

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had undergone similar surgery and recommended the consultant. They also had a friend who needed reconstructive surgery following a car accident who also received care from this consultant. Although the consultant came with recommendations, Rosemary researched him and the hospital on the internet. She explained “the literature tells you what surgeons should ask you…the consultant gave me all the information I needed without promoting”. She was very happy with all aspects of her treatment.

Doug buys his medication in Spain. Because he works, he has to pay for prescriptions and he has calculated that it is cheaper to buy large supplies when on holiday there, or he asks friends to bring them back. He explained, “the GP knows, it is on my record…he can’t stop me”.

The prime reason for those who sought private healthcare in the UK was waiting time. Daryl’s husband needed surgery on his spine, and Dennis’s grandson needed grommets inserting. For both, a long wait was unacceptable to them. Tessa paid for healthcare privately in the UK, as she did not want to burden the NHS, and she wanted to have her reconstructive surgery quickly.

5.5.6 For what reasons would you go abroad?

Participants were asked for what conditions they would seek healthcare abroad. Those who had been treated abroad, whether planned or emergency, would go back. They were confident about the care, and were pleased with the facilities, the staff and the outcomes. Those who had received private health care in the UK were more hesitant, although, many said they would go abroad for surgery or treatment, for example if new drugs were available. Many participants cited their concerns about potential problems with aftercare: where would they receive this care, how would they manage abroad immediately post surgery, and what would happen if there were complication? Comments included, “I thought about going abroad for my operation, it would have been £3,000 cheaper, but I didn’t want to be on my own”. Others had concerns about potential problems with the language.

Tessa explained, “I am not in a position to always have private healthcare…I don’t have insurance...it was once-off. But if it was another one-off but with a long waiting list, because I work, I would consider going abroad for the operation”.

John, who has received extensive cancer treatment, would be prepared to go abroad for treatment “if I didn’t think I was getting the right treatment here, or was able to get the right treatment here. [my cancer] is very rare so it is a bit hit and miss…so I would be prepared to go abroad to try new treatment”.

The relationship between paying for healthcare and the quality received was clear to all, as one participant commented, “if you go abroad, you are paying for care, and whenever you pay you get better treatment”.

Interestingly, despite many negative comments about perceived problems in the NHS, participants without private insurance (and some with) also said they were happy being

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managed in the NHS, particularly for specialist care. Comments included “Doctors in the NHS are happy to refer you to other doctors specialising in the field. I am happy inside the NHS”; “Macmillan nurses are brilliant and highly skilled” and “I have nothing to complain about…the local hospital is clean…when I have an appointment it is fine, it is the waiting”.

Participants also recognised that there could be problems with private healthcare, or healthcare abroad. For example, Vicky described, “When I had my second knee operation done, the lady in the bed next to me had had a knee replacement in Eastern Europe and had to have it repaired. She was not happy about it. You think you will get the best care when you go abroad, but this lady has not”. Josie commented “I thought you were not supposed to fly after surgery, yet you would have to if you went abroad...that’s probably why you tag on a holiday at the end. In the US you can do a holiday and have a gastric band…it’s a whole package. I wouldn’t chance it…I’ll stick with weightwatchers”.

Rosemary, who had received surgery in South Africa said, “I am considering having more cosmetic surgery (a tummy tuck which is more invasive). I would prefer to have it done in the UK but it would be more expensive, but if it went wrong in South Africa it would cost a fortune. I have to weigh this up. If it was major surgery I would have it done in a private hospital in the UK and would do a lot of research. I would only seek planned cosmetic minor surgery abroad, but only in South Africa. I wouldn’t go anywhere like Romania”.

When asked about receipt of dental care abroad, several participants explicitly stated that they would not want to go. Daryl, however, had researched going abroad to Austria or Germany for a tooth implant, the need for which had been caused by a “problematic implant from a poor dentist. I contacted the PCT…I was thinking about suing him…The PCT didn’t support this. I looked at facilities on-line. The information was clear. The price was half and there was aftercare”.

Finally, several participants commented that they felt they had paid taxes for many years, and should be able to have NHS care, and therefore should not be thinking about going abroad. Several had commented during the course of the group sessions that they had not thought about going abroad for healthcare, but might do so now. A few, having heard more about the potential for receipt of health care abroad, would not just now consider this an option, but wanted to know more about it, for example, “I have heard you can get your heart operation in Belgium…how do you apply for this if you are on the waiting list…I would be interested in this. ..I don’t know how to go about this”.

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Section 6: Survey of NHS Commissioners

Key findings Our survey of commissioners had a low response rate. This is in itself evidence of

the low priority given by commissioners to patients requesting planned care overseas.

Despite the low number of responses, there were common themes within the responses we did receive: The majority of commissioners understand that there are two parallel routes for funding planned healthcare abroad, but do not necessarily consider the implications for following one route rather than another

The majority of commissioners have processes in place for managing requests and authorisations.

As evidenced by the small numbers of patients who receive planned healthcare abroad by either route commissioners see these patients as exceptional and different. Most have some form of ‘Exception Panels’ whereby requests are reviewed.

None of the responding PCTs or Health Boards indicated they actively discouraged or dismissed cross-border requests out of hand. However there was no evidence that PCTs were actively supporting or encouraging people to exercise their rights in this area.

Most commissioners do not have leaflets or information for patients, and frequently refer patients to the DH web site or to PALS. Some commissioners referred to Commissioning Strategies on their web sites.

Our analysis of the data from commissioners suggests a range of 0 requests for authorisation that they have ever received to around 20, with the maximum number of authorisations being around 8 (this is supported by our analysis of the DWP data).

The very small number of authorisations under article 56 suggests that this is not a route through which many patients are funded. This may reflect unwillingness on the part of patients to pay in advance of receipt of care, an unwillingness of commissioners to pay for healthcare retrospectively for which there may not have been prior authorisation, or the difficulties faced by patients in receiving information and going down this route.

Only around half of respondents were able to describe the upcoming new directive and only around 10% in any detail. This lack of knowledge is not a positive indicator for preparedness for the directive.

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6.1 INTRODUCTION

Our survey of commissioners sought to collect information about:

The processes that Commissioners have in place to receive, process and authorise requests for planned treatment overseas

The patients who have requested and/or received treatment overseas. We are particularly interested in receiving information on treatment undertaken under article 56, as we have no other mechanisms for obtaining this information.

The survey was designed using our literature review and discussions with the DH It was amended following our data collection at DWP and further discussions with the DH (a copy of the survey used is given in the technical appendix).

A letter inviting commissioners to participate in the survey, together with a copy of the electronic survey and a briefing about the study was emailed to directors (or equivalent) of acute commissioning at all PCTs in England, and Health Boards or the equivalent in Scotland, Wales and Northern Ireland. Commissioners were able to return an electronic version of the survey, complete a web version, or post or fax a completed hard copy.

The survey focused on three broad areas:

Baseline information about awareness and planned and actual processes in health boards and PCTs;

Information about patients who had received cross border healthcare How the respondent can help during the next steps in the study, in particular,

whether they are:o Interested in participating in a focus group, or be a case study siteo Prepared to participate in a brief follow-up telephone interview

Commissioners were encouraged to send any documents detailing procedures or guidance describing the processes and/or any reports that that have been drafted for their Boards or Senior Management Groups. Focus groups and case studies were designed to elicit additional and more in-depth information about processes, barriers and problems, and good practice. In the event, although 10 respondents expressed an initial interest in participating in a focus groups, it was not possible to organise these groups, as no participants were able to commit to specific dates or time offered. However, five of these respondents did offer to be case study sites, offers which were accepted. The case study analysis is given in section 7 of this report.

We received and analysed responses from 38 commissioners, 35 of which are from English PCTs, two from Wales and one from Scotland. Thus the response rate for English PCTs was 25%27 despite sending our first tranche of emails in early December. We had significant problems with the response rate, and adopted several approaches to increasing this,

27 Our denominator is 151, as one PCT referred us to a second for their response.

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including multiple emails and phoning all non-responding PCTs and speaking to the relevant person. We believe that reasons for the low response rate include:

The subject matter being very low priority for most PCTs Identifying the correct person in a PCT (confirmed by many of the responses to our

follow-up phone calls, described below) PCTs changing email addresses: we have had frequent bounce backs

Responses to our phone calls included:

Original contact having left the organisation, and being provided with name of new contact, with name of alternative, or being told there is no replacement;

No response, but left messages with co-workers, or on answer machines Explanations why surveys could not be completed; No response to phone call and no opportunity to leave message

Although many people we spoke to gave us alternative details, or told us to re-send surveys with promises of completion, the response rate was still low. Whilst we suspect the lack of interest in responding was due to many areas dealing with few requests in this area, it is interesting to note that the PCTs with the highest number of E112s authorised did not, despite our best efforts, complete surveys. One PCT, with seven E112s authorised told us that they “did not feel equipped to deal with it and so won’t be returning it”.

6.2 ANALYSIS OF RESPONSES

6.2.1 Level of knowledge and readiness

36 (95%) of respondents are aware of the requirements for authorisation of health care abroad under regulation 1408/71 (using form E112), and 32 (84%) are aware of the requirements for authorisation under Article 56. All but four gave an explanation of their awareness of processes re E112 and all but five gave an explanation re article 56. The explanations were mostly factual, often referencing their guidelines: “E112 entitles patients to treatment in the state-funded section of another EEA country and Switzerland”, or “We follow the guidance on the NHS Choices website regarding E112 applications”. An example of a typical longer explanation in respect of the E112 is:

“The E112 process entitles patients to be treated in the state-funded sector of another European country (although not all of them). Treatment is provided under the same terms and conditions as residents of that country. The commissioner has to be assured that a number of criteria are met: - A UK NHS consultant has recommended in writing that the patient needs to be treated in the other EU country, and that a full clinical assessment has been carried out to demonstrate that the treatment will meet your specific needs. - The costs of sending the patient abroad for treatment are justifiable - The treatment is available under the other country’s state health scheme. - The treatment is available under the other country’s state health scheme. - The patient is entitled to treatment under the NHS.”

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Many of the responses were very similar, and many referred to the DH or NHS Choices websites. The majority of respondents understood the nuances of the difference between E112 and article 56, especially in respect of the levels of funding that can be offered.

The majority of commissioners responding to the survey understand that there are two parallel routes for funding planned healthcare abroad. However, a minority (16%) did not fully understand all requirements for authorising treatment abroad. If the same percentage of all PCTs do not understand requirements – which is a conservative estimate as it is feasible that those who did not respond to the survey are more likely to not understand processes – it means that at least 20 PCTs do not fully understand processes.

Finally, 23 (61%) of respondents are aware of the proposed directive from the EU in respect of cross border health care. This is a lower figure than are aware of the parallel routes for authorisation and funding. Nineteen gave a brief explanation. Several referred to the DH website, or indicated that they were aware that the EU was proposing a new directive but gave no further explanation, and four respondents gave a more detailed explanation. One respondent stated they had participated in the consultation on wording.

32 (84%) of respondents told us that they had processes in place for the authorisation of the planned receipt of healthcare using form E112 or Article 56, with only four telling us they did not. 34 respondents gave an explanation of their processes (or lack of them), and several attached documents which described these processes. We specifically asked respondents to describe briefly their processes, indicate whether they had a panel or group that reviews applications, and who takes responsibility for applications, and whether there were quality audits in place. We did not request information on the accessibility of these processes, although from the qualitative site visit interviews, and the mystery shopping, we discovered that the processes and guidelines were mostly for internal use. The processes did not necessarily refer to the regulations but normally described the steps by which such a request was considered and authorised.

19 PCTs described processes involving the application being considered by a panel, examples of the panel name being the Exceptional Circumstances Panel, the Individual Patient Panel, the Individual Patient Commissioning Panel, the Exceptional Treatments Group or the Urgent Individual Funding Requests Panel. Other processes cited by five PCTs did not refer to Panels but to Processes, for example, the PCT Individual Funding Request process. Two PCTs described processes involving the case being considered in the first instance by a Director of Commissioning or Associate Medical Director. Finally, other respondents cited general policies: one cited a policy drafted by the Strategic Health Authority’s Strategic Commissioning Group, another a Joint Commissioning Policy, a third “has a team in place dealing with individual requests”, and a fourth that they have a policy which is not yet finalised. The responses gave us insights into how PCTs normally considered these requests, which we followed up in more detail at the site visits.

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6.2.2 Guidance offered by commissioners

Table 6.1 shows the responses to our question on what guidance does the commissioner offer to patients who request receipt of health care overseas, whether potentially being paid for by the PCT/DWP or privately by the patient or health insurance. Commissioners could provide multiple responses.

Table 6.1 Guidance offered by commissioners to patients

Guidance offered to patient No (%) respondentsoffering guidance

Guidance on funding 23 (61%)Guidance on eligibility 24 (63%)Guidance on the appeals procedure 17 (45%)Guidance on pathways of care 5 (13%)Guidance on associated costs, such as travel 11 (29%)Guidance on selection of healthcare provider 3 (8%)Guidance on follow-up to care received 4 (11%)Guidance on what to do if patient has complications after treatment 4 (11%)Guidance on what to do if patient wants to make complaint 8 (21%)Refer patient on to another organisation which does provide guidance 5 (13%)Never been approached 3 (8%)Do not offer guidance 3 (8%)Don’t know 4 (11%)

Responses given by those that referred patients to another organisation included the DH website, the local PALS service, a referring trust, or the local SHA.

Commissioners were asked in what format they provide guidance: 23 (61%) told us verbal – by telephone; 8 (21%) verbal – face to face; 17 (45%) provided written guidance; and 6 (16%) that the guidance was on the commissioner website. 24 briefly described the guidance, and by whom it was offered. Box 6.1 gives examples of the guidance offered. Guidance can be offered by a Commissioning Manager, the PALS manager, or members of the Exception Treatment Team (or equivalent). From the responses given in box 6.1, we do not know how off-putting was the guidance, and whether potential patients, having received the guidance, did not proceed, because of barriers (implicit or explicit) put in place. However, again, these responses gave us insights that we were able to follow up in the case study site visits and mystery shopping, for example, how accurate was the information, whether it conformed to regulations, and how receptive and accommodating were commissioners

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Box 6.1 Examples of guidance offered

A commissioner would explain the process set out above and ascertain that the patient is registered with a local PCT for eligibility reasons and advise that associated costs such as travel would not be covered;

Guidance is often given by the Head of Contracting to explain the process that needs to be undertaken in order for patients to have their funding approved. Individuals are shown or talked through the National guidance and the internet links are given to patients so that they can understand that it is a national process;

If the patient telephoned the office, guidance is given on how to request funding by the responsible officer in charge of that area, otherwise a copy of the policy is sent to the patient to review;

Patients will receive guidance via telephone discussions explaining the position of the PCT; they will also receive letters outlining what is approved and funded and method payments will be made. DH guidance is shared and, if required, a meeting with patients would be available (this has taken place on one occasion). The PCTs policy for overseas care is explained in the PCTs General Commissioning Policy, available on the website;

The guidance has been offered by the public health doctor who is responsible for funding out-of-area treatments both in the UK and overseas;

To date we have received only one request. This was dealt with by the ETR Team and guidance was given verbally by telephone;

To my knowledge the PCT has invited and received members of the public to the PCT for face to face meetings relating to guidance, appeals and complaints. Various members of staff also offer assistance by telephone, email and PCT has a website making some details available to patients;

We refer patients to look at the Department of Health website www.dh.gov.uk and our website has information on how to make a complaint. We can also send a leaflet on how to complain by post.

10 respondents provided us with copies of internal documents, and three told us that they did have a leaflet which they gave to patients.

6.2.3 Local discussions or networks

Commissioners were asked whether they had discussed or met with other commissioners, healthcare providers or patient groups around cross border health care. A summary of responses is shown in table 6.2.

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Table 6.2 Discussions with commissioners and other organisations

Discussions or meetings with organisations No (%) respondents participating indiscussions

Other PCTs or commissioners 5 (13%)Strategic Health Authorities 0 (0%)NHS healthcare providers 2 (5%)Private healthcare providers 1 (3%)Intermediary organisations 0 (0%)Patient Groups 0 (0%)Other 2 (5%)Participated in no discussions 20 (53%)Don’t know 8 (21%)

Commissioners were asked to describe the nature of any discussions held, and with whom. Box 6.2 gives examples of responses.

Box 6.2 Examples of Local Discussions

As part of a session run by the PCT solicitors attended by PCTs and Trusts the issue of cross border care was discussed;

Legal seminar; Discussions around developing a Standardised Policy with [names of two] PCTs; South East London PCTs (6 PCTS) have an Exceptional Treatments Group and

we have had discussions within this group, updating guidance, revising application form, agreement to include this area within the individual funding request panels for considerations and appeals.

Eight respondents told us that there were local or regional networks that discuss cross border healthcare. Examples of these networks include SHA based Specialised Commissioning Groups; SHA Dental leads meetings; PCT collaborative; cancer and cardiac networks; and sector based exceptional patients commissioning groups, comprising several PCTs.

6.3 ANALYSIS OF DATA ON PATIENTS WHO HAVE RECEIVED TREATMENT ABROAD IN MAINLAND EUROPE

6.3.1 Overview

This section of the survey focused on four areas:

Whether commissioners had assessed likely demand The number of applications made for funding Reasons why funding is authorised and not authorised The number authorised, and details about these patients.

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6.3.2 Assessment of likely demand

Two organisations told us that they had undertaken work locally to assess likely levels of demand for cross border health care in their organisation, 33 (87%) told us they had not, and 3 respondents did not know. Commissioners were also asked to provide any documents describing this work. One PCT explained the process: “previous year’s activity is considered and any trends or commissioning gaps would be factored into planning”.

6.3.3 Applications for funding

Commissioners were asked how many applications had been made for funding authorisation under the various routes. 14 (37%) had received applications under E112, totalling 32 requests, 16 (50%) of which were from 3 (21%) of the organisations that had received applications. 10 (26%) had received applications under article 56, totalling 18 requests.

Using form E112, the number of applications received by organisations is shown in table 6.3 and under article 56 is shown in table 6.4.

Table 6.3 Applications under E112 by organisation

Requests received by organisation

Number of organisations Total requests

1 7 72 3 63 1 34 2 88 1 8

Total 14 32

Table 6.4 Applications under article 56 by organisation

Requests received by organisation

Number of organisations Total requests

1 6 62 1 23 2 6*4 1 4

Total 10 18*NB 3 requests were retrospective claims, therefore handled under article 56

Additionally, 12 organisations had received applications with no route specified, of which one had received 15, and one estimated between 5-10, thus totalling between 29-34 applications. Therefore across the 38 organisations, there have been around 79-84 applications, an average of just over 2 per organisation. One organisation also told us that they received around one enquiry per month, but had not actually received a request. These numbers appear to be low in comparison to the E112 totals alone derived from the DWP analysis. However, it does reinforce our view that very small numbers of requests are currently being made for planned healthcare abroad.

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6.3.4 Authorisations

Commissioners were asked the most common reasons why they authorise or refuse to authorise patients for receipt of healthcare abroad. Box 6.3 summarises reasons for authorisation, and box 6.4 summarises reasons for refusal of authorisation.

Box 6.3 Reasons for authorising receipt of healthcare abroad

Accessing maternity services Where treatment is clinically justified, cost effective and would have been routinely

funded by the PCT but where treatment in the UK could not be provided without undue delay

Continuity of care Dental care Expertise not available in UK, but would routinely commission in the UK, and/or

recommended by the local NHS specialist Patient has been under care of a consultant abroad Patient has ties to the country involved, e.g. the family is living there

Several respondents cited treatment, normally specialist, not being available in the UK as a legitimate reason for funding healthcare.

Box 6.4 Reasons for refusal of authorisation for receipt of healthcare abroad

The treatment is available in the UK, and there is no clinical need for healthcare abroad

Treatment would not be offered on the NHS, e.g. cosmetic surgery The local waiting times indicate treatment available within 18 weeks The treatment requested is dissimilar to the care pathway in the UK for a particular

condition Prior approval had not been sought No exceptional circumstances

Several respondents explicitly stated that they would not authorise treatment for a patient who wanted to return to a European country, where they previously resided. One PCT gave a detailed response, which is shown below:

“[name of] PCT do not routinely fund treatments outside of the UK because it is more difficult to ensure clinical standards, patient safety and performance requirements in treatment facilities outside the direct UK jurisdiction, it is more difficult to ensure patient care and follow on care with treatment facilities where there is no established contractual relationship and there may be other patient/carer travel costs that fall to the PCT which would be better directed to fund direct patient care for the wider PCT patient groups”.Of concern must be those PCTs refusing treatment abroad if the care can be delivered within local waiting times (even if those waits may be 18 weeks) but where clinical need may indicate that the patient needs care more urgently, or where the treatment requested has a dissimilar pathway. Additionally, four of the reasons given in box 6.4 gave us cause for

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concern, as they run contrary to case law and domestic regulations and directions. These findings indicate that commissioners, despite indicating earlier that they know and follow guidance, in fact are not, and hence patients may be being disadvantaged.

6.3.5 Analysis of authorisations

There was a discrepancy in the data given to us by the PCTs. We were told that in total, 30 authorisations were issued, 20 under E112 and 10 under article 56, yet when the data on each patient was analysed, only 6 were authorised under article 56, 23 under E112, and no data was given for one patient. Table 6.5 compares the number seeking authorisation with those receiving treatment.

Table 6.5 Analysis of authorisations

Treatment route Seeking authorisation Received treatmentE112 32 23Article 56 18 6Route not specified 29-34 1Total 79 - 84 30

These figures indicate that only around 35% of requests for treatment abroad are authorised: with a greater percentage under the E112 routes than under article 56. It is likely that many of the requests for funding under article 56 are being made by individuals who have already received treatment abroad, and are seeking retrospective funding, probably for healthcare that the PCT had not authorised. This seems to be an area for differential interpretation, as it appears that some PCTs do authorise treatment retrospectively, whilst others do not.

Section 3 of this report has provided a detailed analysis of the patients treated under E112, using the data from the DWP. As indicated earlier in this report, the only route to information on patients funded under article 56 is through data from PCTs. Below, we summarise the findings on the patients funded through this route.

The country of residence of all six patients who received treatment under article 56 was the UK. Two received treatment in France, whilst the others received their treatment in Malta, Germany, the Czech Republic and Belgium. Four of the patients were being treated for orthopaedic conditions: two received hip replacements (one for arthritis which according to the PCT had not been previously authorised and one because they needed specialist care), one (a child) was given a correction harness for hip dysplasia, and one required an arthroscopic excision of the knee for glass in the knee. Of the remaining two patients, one was being treated for grade 3 carcinoma of the breast (and was being treated abroad so they could be near their family), and the second received bariatric surgery for obesity.

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Section 7: Case studies of NHSCommissioners

Key Findings By the policies and procedures used in deciding on whether to fund requests for

treatment within the EU, the case study PCTs are potentially at risk of challenge by patients on the decisions they reach.

All PCTs used funding panels to decide whether an individual should receive funding for overseas treatment. These panels all consider undue wait based on local waiting times rather than patient need, whether the pathway overseas is the same locally and consultant support for treatment. In addition, some panels also considered cost effectiveness, patient safety and governance. None of these considerations are necessary for funding under Article 56 and so could potentially be challenged as unlawful barriers.

The use of exceptional funding panels is resource intensive acting which in itself acts as a barrier for PCTs being able to assess cases in anything but very low numbers.

The case study PCTs reject patient requests for treatment within the EU unless exceptional reasons for funding can be provided. They do not view treatment overseas as a right that should be funded unless there are exceptional reasons to withhold funding.

An opinion expressed in some PCTs was that patients should not have a right to overseas treatment within the EU.. This cultural barrier could in part explain why patients seeking treatment overseas are treated as exceptional funding cases.

Detailed knowledge of the different routes for planned overseas treatment amongst commissioners was variable across sites. There is a suspicion that knowledge in this area is even weaker amongst GPs and clinicians. As commissioners and GPs are both stated in the NHS Choices website as first points of call for patients considering planned treatment abroad, even a suggestion that their knowledge in this area is not uniform is noteworthy.

Information was readily available for patients in four out of five PCTs on the policy towards planned overseas care within the PCT. This was largely if not wholly built upon guidance provided by the Department of Health Information to clinicians – specifically GPs – on funding overseas treatment was not provided in two PCTs although information on local processes has been provided in the other two case study sites. .

Concern is not particularly with the information being provided, but rather the processes that are used to make decisions.

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7.1 INTRODUCTION

To complement the commissioner survey, our research incorporated site visits to PCTs with the aim of gaining an in depth understanding at a PCT level of:

The numbers of patients requesting overseas treatment Advice and information given to patients and clinicians (including GPs) on overseas

treatment The process by which a request for funding for planned overseas treatment is

considered including:o How the process is instigatedo Who makes the decision and what factors are considered in making the

decisiono How the decision for Article 56 or E112 is madeo Whether there have been any challenges to decisionso Plans to deal with the future changes to entitlement to overseas healthcare

What the PCT sees as the barriers to allowing people to be treated abroad

Five PCTs volunteered to engage with this element of the research. They were all in the South of England. This would ordinarily raise concerns over how representative findings are for the country as a whole. However, the purpose of this phase was to provide depth to the breadth of findings from the case studies. We also believed it is reasonable to assume that given the consistency in findings relating to PCTs from other parts of the research, notably the commissioner survey and ‘mystery shopper’ exercise, issues and findings from the case studies would be relevant across the country. Ultimately the findings from this stage were also consistent across sites indicating that they can be fairly generalised to PCTs across the country accepting that there may be exceptions.

At each site we asked to speak to a senior commissioner who had responsibility for overseas treatment or understood local processes, a PALS representative and a finance officer. In two PCTs, all three of these roles were interviewed. In a further two, a finance officer was unavailable and in one only a commissioner was interviewed.

We also interviewed a DHSSPS representative from Northern Ireland exploring similar issues as the PCT case studies but also investigating cross border issues specifically related to the Republic of Ireland.

We would like to thank all those who gave their time to engage with this element of the research.

7.2 PATIENT NUMBERS

Confirming other parts of the research, PCTs reported being aware of very few cases of patients seeking treatment overseas either through an E112 or Article 56. All areas were able to report in detail both cases that reached a commissioning level or were dealt with by PALS.

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Patient requests about overseas treatment that that reached commissioners ranged from two over the past four years to twenty five in the past year. However, in the latter case only four patients pursued treatment overseas as an option after an initial conversation, with the majority of calls asking for information rather than about specific treatment.

Calls to PALS about overseas treatment were also low. In one area the PALS representative stated that their service had not had a single call about overseas treatment in four years. In the three other services spoken to numbers of calls were three to four per year.

PCTs were unable to report how many times GPs had been asked by their patients about overseas treatment, although in one PCT they were aware of at least one case that had started with a request to a GP and in another they suspected that GPs may be ‘filtering patients’ away from overseas treatment. There was no evidence to back up this statement.

There was only one reported request across all the PCTs for reimbursement for dental treatment. No PCT had seen an increase in patients requesting or enquiring about funding for overseas treatment over the past three or four years.

7.3 INFORMATION, KNOWLEDGE AND ADVICE

Written information for patients on planned overseas treatment was available in four of the five PCTs visited and was broadly comparable across these sites. The information available to different extents sets out the criteria for funding overseas treatment, the actions the patient must undertake to be considered for funding and the process by which a decision will be made. In two PCTs this information is made available on the PCT website and in all four PCTs is available when a patient enquires about planned treatment abroad. One PCT questioned whether they were ‘advertising patients’ option to go abroad well enough’.

The information available was built on information taken from Department of Health websites and guidance and so therefore is accurate in terms of its description of different funding routes. In one PCT the information provided was taken directly from the NHS Choices website, which was generally well thought of across PCTs – particularly by PALS. However, searching for ‘overseas treatment’ on the NHS Choices website brings up some curious information that does not reflect any practice that we found in our research or indeed have been aware of happening for a number of years28. Searching for ‘planned treatment abroad’ does provide clearer information however.

Looking beyond written information, most people spoken to had a basic understanding of the difference between Article 56 and E112 routes for funding, but there were two commissioners who were not clear of the differences and one commissioner who believed the E112 was a form that a patient had to complete. In addition, as will be discussed further below PCTs seemed to be very concerned with governance issues around Article 56. This suggests they do not fully understand the fact that patients funded under Article 56 are out of

28 See http://www.nhs.uk/chq/pages/907.aspx?categoryid=70&subcategoryid=172

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the jurisdiction of the NHS and transitively do not have a thorough understanding of the Article 56 processes.

Two PCTs stated they that provided information on overseas treatment directly to clinicians, including GPs. Whilst no PCT could provide anything other than anecdotal evidence of rare requests for overseas treatment from GPs that PCTs deemed inappropriate, there was a suspicion that GPs were ‘filtering’ patients and providing advice that may not be accurate. With this in mind, there was a request from three PCTs that better information needs to be made available from the Department of Health for patients but specifically for GPs and clinicians on overseas treatment. Again, this seems prescient given that GPs are identified in the NHS Choices information as being a local commissioner in England to approach about planned treatment abroad.

7.4 PROCESSES FOR CONSIDERING PLANNED TREATMENT ABROAD

Requests for funding for planned treatment abroad are seen by all five PCTs as requests for exceptional funding rather than routine exercise of choice. All the PCTs use mechanisms and processes to make the decision whether or not to fund that are used for other individual patient funding requests. In all patient cases talked through at each site that had reached the point of a decision being required a funding panel had made that decision.

In two of the PCTs it was stated that only the ‘questionable’ cases would end up at panel, but in practice all requests up to the time of the interview had been ‘questionable’ and therefore decided by a panel.

A pre-requisite for prior authorisation for consideration for funding in three PCTs was that a clinician – either a GP or consultant - must instigate the process although a patient may make the initial request. In the other two PCTs, whilst a patient can initiate the process, clinician input is still required for funding to be considered.

Example

A patient was seeking treatment for carpel tunnel syndrome in both hands. The PCT would ordinarily fund treatment for one hand at a time, but the patient had found a consultant in the EU who would treat both hands at the same time and sooner than the treatment could be provided locally. The patient was told that as this was not the ordinary patient pathway in the PCT there would need to be 'undue delay' and that their consultant would need to approve treatment.

Of concern is that the approach adopted by the PCT, of this proposed treatment regime ‘not being the ordinary patient pathway’ is completely irrelevant in terms of patients exercising their rights to cross-border treatment.In one PCT an application form is sent out to clinicians or patients when a request for funding for overseas treatment comes in. The application form collates information on patient demographics and condition, the treatment history and treatment being sought and

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the clinical evidence of effectiveness of the treatment. Asking for information on clinical effectiveness seems somewhat unusual given that experimental treatment or treatments not routinely funded by the PCT would ordinarily be considered for planned treatment abroad. There are insufficient cases to evaluate whether the application form simplifies the process or from a patient perspective actually acts as a barrier to following through a request for funding.

The factors considered by a panel in deciding on funding across all sites were:

Does consultant support this? Is there an undue wait? Is the patient resident? Is this part of a pathway they would ordinarily fund?

In addition, individual panels also considered several other factors in making their decision including:

Is the treatment cost effective? Are there any concerns about patient safety? Are there any governance issues?

In terms of NHS practice and preparedness, the above give grave cause for concern as they can be construed as being barriers to patients exercising their rights to obtain treatment abroad. It appears that the NHS does not appreciate the risks they are running in taking such an approach.

Example

An active blind patient needed a hip replacement. The patient wanted intensive physiotherapy in hospital before returning home and also requested a single room post operation as their blindness impinged on their ability to navigate a ward where objects may be continually moved. The local hospital refused to provide this level of care but the patient found an EU hospital that would and so approached the PCT to see whether he could go for treatment in the EU hospital funded under Article 56.

A local commissioner visited the patient and informed him that they would approach the local acute trust and see if they could meet his needs. The hospital refused the PCT as they had the patient. The commissioner took the case to an exceptional funding panel who agreed to fund the patient under Article 56. Whether the case involved 'undue delay' was not considered.

In one PCT £30,000 per annum was set aside for individual funding requests for ‘non-NHS, non-contracted services’. Funding for patients receiving planned treatment abroad came out of this amount.

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Of the small number of cases talked through across sites, few appeared to be cases of ‘undue delay’ which indicates that this is not always a significant determining factor. When ‘undue delay’ was considered, it appeared to be focused on current waiting times within the PCT rather than an individual patient’s needs. Both these findings resonate with the findings from the review of E112s at the DWP. Whether patients went down Article 56 or applied for an E112 was always in the hands of patients. No PCT routinely advised a patient as to which route they should go down or used formal criteria to decide this on behalf of a patient.

In terms of documenting the process, all PCTs understood that there needed to be transparency in how the decision was reached with two PCTs stating that they believed they could be challenged on process but not decision. One of these PCTs kept very detailed records on each case going to the funding panel and what the panel had considered in reaching its decision.

In all PCTs, travel and accommodation costs would not be routinely reimbursed unless these costs would have been covered for treatment locally. The vignettes of cases shown in this section provide a flavour of the types of cases being considered by PCTs and the thought process going into that consideration. They highlight the time involved in dealing with these cases, which by three commissioners was described as ‘substantial’. They also highlight the inconsistency in how patient pathways and ‘undue delay’ are interpreted in different areas. Two PCTs reported challenges to a decision not to fund, one of which was turned down on appeal and the second resulted in the PCT Chief Executive agreeing to reimburse treatment even though the patient did not meet the criteria for funding. Only two PCTs said that they were beginning to think how to deal with potential changes and increases in demand for treatment abroad. One of these PCTs said they were specifically going to look at dentistry. Planning in both PCTs was at an early stage.

7.5 BARRIERS TO FUNDING PATIENTS ABROAD

7.5.1 Overview

Barriers for PCTs to fund patients abroad, all of which are contrary to the law, fell into the following categories:

Financial constraints Governance Comparable pathways PCT culture

7.5.2 Financial constraints

Two PCTs questioned where the money would come from to fund treatment abroad if more people decided to exercise this choice. This is curious given the PCT only has to fund what

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they would ordinarily fund up to the cost they would ordinarily pay so there should be no impact on the cost of direct patient care.

One PCT stated that translation costs if bills for treatment are sent to the PCT without prior authorisation could be substantial, especially given that the translation will be of language that is medical and technical. The biggest financial constraint that could be seen was the resource constraint of the current processes involved to fund overseas treatment. Given the time that can be taken for a single case as they are all treated effectively as exceptions, the process to make a decision requires a level of resource that means if numbers of people seeking treatment abroad increased it is difficult to see how funding panels would cope.

7.5.3 Governance

Whilst one PCT assumed that a state hospital in the EU offered the same standard of care as in the UK, all PCTs stated that assuring that the quality of care a patient received in an overseas hospital – especially if they use Article 56 in a private hospital – was a barrier to allowing people to have treatment overseas. Two PCTs stated that they would try to investigate the quality of care offered by looking at websites. The recommendation of a particularly hospital or consultant by a local clinician was considered to be an important way of ensuring the quality of care by all PCTs.

This represents a major risk, as people using the Article. 56 route are effectively stepping outside of NHS jurisdiction, however these actions could be construed as confirming a continuing duty of care.

On top of the concerns for patient safety, governance was seen as a barrier for two further reasons. If something goes wrong because of poor quality of care the PCT could be left to fund treatment not only to treat the original condition (again) but also to treat complications arising. In addition, PCTs were not clear where liability would lie should someone seek compensation because of inadequate quality of care.

Finally, if patients seek reimbursement for overseas treatment without prior authorisation, commissioners felt that without a clear way of assessing quality of care they could be funding treatment at a level of quality that they would not accept locally.

These concerns and actions are understandable. However, patients travelling under Article 56 should be informed that they are stepping outside of NHS jurisdiction. If PCTs are concerned about quality of treatment overseas and look at this in making a funding decision, this could be inferred that they actually do have a legal duty of care that in this case they do not.

7.5.4 Patient Pathways

A key consideration of the decision made to fund care is whether the patient pathway followed in the planned overseas treatment is the same as that locally. PCTs are effectively using a comparison of pathways to analyse whether this is treatment that would be available

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locally. This becomes particularly problematic if people seek reimbursement for treatment retrospectively as PCTs try to understand exactly what has been done with sometimes incomplete information. This is understandable, but irrelevant to the consideration as to whether to reimburse.

7.5.5 Culture

In three PCTs there was a belief by commissioners –vociferously expressed in some cases – that allowing patients to have treatment abroad was not something they agreed with. Coupled with the fact that funding for overseas treatment is dealt with as an exceptional request, low numbers of people currently requesting treatment and the lack of uniform knowledge about overseas treatment, these beliefs could result in a culture of reluctance to fund treatment abroad even where there is a case that should be funded.

As one PCT stated “overseas treatment is not something we would routinely fund”

7.5.6 Summary

Looking at these barriers together suggests that PCTs are actually placing obstacles in the way of funding treatment that should not only be there but also open the decisions of the PCT up to challenge by patients.

Given funding can be no higher than that the PCT would pay anyway, financial concerns should be irrelevant. A resource intensive decision making process is not a legal barrier for funding.

Governance issues under Article 56 should not be the concern of the PCT as the patient is outwith the jurisdiction of the NHS.

A PCTs’ belief and position on what an individual’s right to overseas treatment should be is irrelevant to the rights existing under legislation and case law.

The one area which is ambiguous is the effort put in to match patient pathways, and the Department of Health should consider issuing more robust guidance on how a commissioning body should decide how to interpret whether a treatment would be ordinarily funded locally. All of the above indicate the putting in place of unjustified barriers to patient mobility and thus represent significant risks to the NHS.

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7.6 NORTHERN IRELAND

Although there is now only one Board covering the whole of Northern Ireland, this is a relatively recent event and the person we spoke to could only relate experience from one of the previous smaller Boards. However, they felt that their experience would reflect other Boards and they also were able to talk about the current position. In their former Board, there were no successful Article 56s as far as they are aware. There had been a couple of applications that were refused but had been considered good test cases for the position in Northern Ireland.  One of these cases was for organ transplant and explains their processes well.

Example

A consultant had approached the Board about a patient wanted reimbursement for treatment already received in Germany as part of initial treatment for kidney transplant. The patients' brother lived in Germany and was willing to donate a kidney but wanted the operation in Germany rather than the UK. The Health Board sees such a request as a legal issue and so sought legal advice from the Board's legal department. The issues they were concerned about were undue delay - from a patient rather than strict waiting time perspective and whether there were any contraindications. The individual in the Board considering the case and the Board legal department felt that as there was no undue delay - the patient could have been seen in the same time period in Northern Ireland - the costs were not reimbursed. Interestingly this was all lead by an individual in the Board rather than going to a panel.  In terms of formal protocols and processes when the first set of guidance around funding treatment in the EU came out the Board looked at what process they would use for extra contractual cases and what extra steps would be needed with Article 56s. It was decided that they would check with the consultant for undue delay and whether they would ordinarily fund this pathway.

 The person we spoke to could not see a situation where they would ever fund an article 56 - pathways would never be identical and there are no real problems with waiting times.  Looking at cross border relationships with Southern Ireland, there are quite a number of elective access services where they have contracts with Southern Ireland but these are just treated as contracted services within Northern Ireland. Only a small number of cases are requested for non contracted services by consultants and these always go as E112s if they have time to apply as they are aware that the Board does not have to fund them.  There had been a situation in the past where consultants were sending patients to Dublin for bone marrow transplantation without E112s or prior notification of the Board. A bill then

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came in for almost £1million. The hospital in question has now requested E112s before allowing treatment. One problem identified with issuing E112s for Southern Ireland was that it is difficult to identify which services are privately or which publicly funded

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Section 8: Mystery Shopping with NHS Commissioners

Key findings The findings from the mystery shopper reinforce and build on those from the

commissioners’ survey and case studies; The initial process of obtaining the contact details for each organisation was mostly a

relatively easy process as they had organisational websites containing the relevant information;

Once the organisations were contacted all but one of the operators spoken to were found to be very polite, helpful and honest about not knowing who to pass the caller on to in relation to the query of planned health care abroad;

There were differences identified in whom to signpost onto depending on the location of the organisation. Scottish Health Boards were found to be more articulate in the process as they do regularly have patients accessing healthcare in England as do those in Northern Ireland;

English PCTs were found to vary and disparities were identified with the information given and most did not immediately know the appropriate department to deal with this type of request. PALS or the customer relations teams were found to be the most popular choice to which to refer the mystery shopper;

The information given was often basic and usually included a signposting back to the callers GP. Where more in depth information about the process and how to apply for funding was obtained, it was usually from the PCTs who had dealt previously with similar requests;

None of the PCTS and only one of the Scottish Boards appeared to have leaflets to explain to members of the public how they can access health care abroad;

Only one of the PCTs said that they received regular queries about accessing planned health care abroad. The majority of PCTs said that they had only ever received one or two enquiries about health care abroad and one said that they had never had an enquiry;

Although organisations appear to have few requests for this type of information at present, the difficulties experienced in obtaining the correct information highlighted a need for the organisations to improve both the knowledge within the organisations and the information given to members of the public. These difficulties represent additional barriers to patients seeking healthcare abroad.

Taken as a whole, one conclusion that can be taken from the mystery shopping experience is that patients are likely to be passed from pillar to post, and in the majority of cases there is no-one at the PCT who is a clearly identified repository of information and expertise. As stated earlier, these represent risks and barriers.

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8.1 INTRODUCTION

The purpose of the mystery shopping activities was two- fold: To investigate the experiences of potential patients who wish to find out about the

possibilities of receiving healthcare abroad To chase up non-respondents to the NHS commissioner survey

One member of the study team, who had a clinical background, but who also had experience working in public patient forums and with the development and delivery of information services to cancer patient, took on the role of mystery shopper. We did not attempt to test the accuracy of advice given under a range of scenarios.

8.2 METHODOLOGY

We used our management database of NHS commissioners, which was drawn up and was continually updated during the undertaking of the NHS Commissioner Survey, by identifying all PCTs and health boards from which we had no response to the survey, who told us that they could not complete the survey for a variety of reasons, or who gave us alternative contact details but from whom we still had not received a survey.

We selected a sample reflecting geographical diversity and responses. Our mystery shopper attempted to contact 32 commissioners over three days, successfully speaking to people in 21 PCTs, and three Health Boards in Wales and Scotland. We also interviewed, though not through the mystery shopping route, two individuals in Northern Ireland, whose names were provided to us.

The starting point for contacting the commissioner was always their website, rather than our contact details: the intention being to replicate the pathway of a member of the public. Our mystery shopper called that number and asked to speak to someone who could tell them how to find out about receiving planned healthcare abroad. Our mystery shopper worked to a protocol and a script, both to ensure comparability across interviews, and also to ensure she did not mislead those we spoke to. When the appropriate person was contacted, our mystery shopper told them who she was, and the purpose of the call.

Our mystery shopper recorded, for each commissioner: How quickly the phone was answered at the first call and the response of the person

answering To whom she was directed, and the steps taken including whether she had to call

back, or they called her, before reaching the appropriate person What the response of the commissioner would be to someone investigating treatment

abroad.

She also updated our contact details so that we could send on to them a survey, if not completed.

8.3 FINDINGS

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8.3.1 Initial phone call

Twenty four organisations were contacted by a mystery shopper over a period of three days, with a lapse time of two weeks. The length of the calls were recorded from the initial dialling of the PCT or Health Board telephone number, as found on the PCT/Health Board website, to the time it took for someone from the organisation to answer. Only one PCT out of the twenty four organisations did not answer the call and one PCT was found to be frequently engaged but did answer after four attempts. Ten of the PCTs and three of the Health Boards answered the call within one minute and nine PCTs answered within two minutes. Two of the PCTs used an automated service which placed the caller in a queuing system before actually speaking to someone, this increased the time of these calls by an additional minute.

The call was normally initially answered by a telephone operator/receptionist except on one occasion when we contacted an organisation in Northern Ireland, where one of the managers answered the call first. On three separate occasions the mystery shopper was put on hold whilst the operator/receptionist sought advice as to whom the mystery shopper should speak to. Four PCTs transferred the mystery shopper to answer machines without an explanation or name of the person to whom they were to speak. Two receptionists informed the mystery shopper that she first needed to contact her GP, and another told her to ring NHS Direct. A third receptionist herself gave advice then put the mystery shopper on hold for an additional six minutes while she spoke to a colleague in contracting, following which she confirmed the information given. The mystery shopper was cut off on three occasions and three operators/receptionists redirected her after having initially directing her to incorrect numbers. On five occasions the mystery shopper was directed to PALS, on three occasions to customer services, twice to a member of the commissioning team and once to an operations manager. On eight occasions the mystery shopper was given an alternative number to ring.

One of the Scottish Health Boards contacted passed the mystery shopper on to three separate areas within their organisation and then finally asked her to ring the Director of Finance the following Monday. Another Scottish Health Board suggested the mystery shopper contact the Scottish Government for further guidance in relation to healthcare abroad for Scotland.

One English PCT gave her contact details of a second person, who then passed her on to a third person, who again passed her on to a fourth and finally to a fifth person. After speaking to the fifth person, the mystery shopper was contacted four days later by a member of a PALS team in another area that apparently covered this particular PCT.

In the opinion of the mystery shopper, most of the organisations contacted were friendly, open and honest about not knowing to whom they should initially direct the mystery shopper to. All the Trusts were very apologetic about not returning the surveys once the mystery shopper had introduced herself to the appropriate person.

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Out of the sample of twenty four organisations, four PCTs were seen as reasonably helpful in that they were able to discuss the process around accessing healthcare abroad, giving advice on the process for applications and the eligibility criteria, although we have concerns about these eligibility criteria, as they may (as discussed in earlier sections) be unjustifiable barriers to patient mobility. Five other organisations were also helpful and returned the call either on the same day or a couple of days later to describe how to access health care abroad.

Ten of the organisations contacted did not appear to feel confident in discussing the issue of planned healthcare abroad. Of those who did have some knowledge, two organisations told the mystery shopper that they did not like taking calls about treatment abroad because as one stated “it is so complicated”.

8.3.2 Next step (s)

The time it took for the mystery shopper to be passed from the operator or receptionist to the next person varied from organisation to organisation, ranging from two minutes to six minutes depending, it appears, on how confident the operator was about to whom the mystery shopper should be directed. The mystery shopper spoke to a total of eight operators/receptionists who passed her onto their PALS teams or customer service staff. On two occasions the mystery shopper was directed to operations managers and another two PCTs signposted her to the commissioning team.

Box 8.1 Response via NHS DirectThe mystery shopper was referred by the operator/receptionist to the walk in centre who then told her to ring NHS Direct. On calling NHS Direct the mystery shopper declared her identity and purpose, as the assessment process required the provision of symptoms and problems. Details were taken and NHS Direct informed her that she would be called back the next day

NHS Direct did call back the next day with very helpful information about accessing the NHS Choices website, the Department of Health’s website and also a telephone number for the Department of Health overseas policy unit. They explained how they would always sign post callers requesting information about travel abroad to the most appropriate websites.

On twelve occasions the mystery shopper left answer machine messages asking for the relevant people to call her back, giving her name, a mobile telephone number and a brief message about seeking advice on planned healthcare abroad. The time it took for people to call back was recorded. Two PCTs responded immediately and returned the call within the same day, another returned the call the following day as did NHS Direct (see vignette above) and three others phoned back within a week. On completion of the research, five organisations had not returned these calls.

The number of steps or people involved in the process from the initial call to the next step varied. Two organisations took just one step of transferring to the right person. Eleven

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organisations took two steps by referring on to one person who then transferred on to another. Six organisations took three steps, one took four, one took five, one took six and another took seven steps to allow the mystery shopper to speak to the most appropriate person.

Another PCT asked which specific country the treatment was in and described how to use the E111, (NB the term E111 was used, not the correct term EHIC), in countries which were part of the European Union. This is noteworthy given the mystery shopper was requesting information on planned healthcare abroad. One PCT told the mystery shopper that their customer service person was on holiday but would call her back and did so a week later. One of the Health Boards, after being asked the questions according to our topic guide, asked the mystery shopper if she was a reporter. After an explanation that she was a mystery shopper and on describing the purpose of the study, the person from the Health Board became more co-operative and explained that she had only ever had one enquiry about travel abroad in all the time she had been in post.

8.3.3 Response when appropriate person reached

Once the mystery shopper had reached the most appropriate person, what she was told would happen if wanting to seek healthcare abroad varied. Two typical explanations were given in boxes 8.2.and 8.3.

Box 8.2 Typical Response: PCT AThe commissioner explained that If treatment was available within the UK within a timeline of 18 weeks then there would not be a case to go abroad if it was expected that the NHS would pay. However if the timeline was longer than 18 weeks then it would be possible to apply for funding but first must seek approval from the PCT and the GP to support an application and emphasised that they do not have any quality checks for healthcare abroad. If you were seeking treatment abroad privately then it would be up you to find out any information on the treatment or facility abroad and the NHS wouldn’t help with this.

Box 8.6 Typical Response: PCT BAn operations manager from this PCT described how to apply for funding from the PCT but explained that the PCT would not fund travel or expenses such as accommodation. The PCT operations manager stated that you would need a clinicians support first and it would also, depending on the type of treatment you were wanting, depend if the NHS would fund it. For example if the NHS doesn’t normally fund a procedure here in the UK then they would not fund this abroad either. Although this PCT did not use any particular leaflet to aid the public with health care abroad, they did adhere to a policy called the Effective Use of Resources which would soon be available to see on line.

Another PCT explained the need to liaise with the GP first as they would need to apply for funding from the PCT as long as the service needed was not provided anywhere else in the

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UK and was not plastic surgery. Several PCTs referred patients to their PALs staff, but two PALS staff to whom the mystery shopper was referred, did not appear to have full knowledge and information. As one stated: they had never had any queries about treatment abroad.

One Scottish Health Board planning officer asked the mystery shopper “would you want to go abroad?” and then proceeded to describe the need to first see the GP or consultant as they would need to apply to the Health Board for any treatment abroad. Only one of the Scottish Health Boards stated that they had a leaflet to direct a patient on how to access healthcare abroad.

One of the English PCTs said that they used a policy. Finally, out of the PCTs contacted only three and NHS Direct directed the mystery shopper to the Department of Health website.

One PCT stated they received two to three queries a month about treatment abroad and that they found the Department of Health’s overseas person to be very useful and helped them with any queries regarding eligibility. Another PCT stated that there were specific guidelines to help with the process.

As previously described, once the appropriate persons in PCTs and other commissioning organisations were aware of the purpose of the mystery shopper’s query and once she had identified herself, all of those spoken to were found to be extremely accommodating and very helpful. A small number of people to whom the mystery shopper spoke initially were found to be unhelpful in their initial signposting, often referring the mystery shopper back to the GP or directing the caller to seek healthcare here in the UK instead. A number of PCTs did have to take certain information from the caller in order to ask someone else and then call the mystery shopper back with the updated information. Four of the PCTs who said they would call back had yet to do so at the time of writing the report, and we were also waiting for a response from the contact in Northern Ireland.

Taken as a whole, one conclusion that can be taken from the mystery shopping experience is that patients are likely to be passed around a number of staff and departments, and in the majority of cases there is no-one at the PCT who is a clearly identified repository of information and expertise. As stated earlier, these represent risks and barriers.

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Section 9: Survey of ProfessionalOrganisations and Patient Associations

Key findings These organisations appear to have a role to play in advising patients about seeking

treatment abroad; Most focused their role on problems associated with seeking private care abroad,

especially choice of facility, and what are the roles and responsibilities of the NHS when patients have complications on returning to the UK;

The DH probably should consider offering guidance to these organisations as to the rights of the patients and the obligations of the NHS.

9.1 INTRODUCTION

A survey was sent to 30 professional organisations and patient associations (this survey is available in the technical report). The purpose of the survey was to investigate the role played by these organisations in advising the public about the receipt of healthcare abroad. The organisations selected for participation in the survey were those associated with conditions for which our research indicated treatment was likely to be obtained abroad.

Conditions targeted were: Cardiac; Orthopaedic Arthritis Dental Infertility Plastic surgery

We also included in our survey generic organisations such as Age Concern, and Patients Associations.

We obtained postal and email addresses from the organisations’ websites. For those organisations without an email address, we sent hard copy surveys to their postal address. We sent two email or postal reminders, followed up by a phone call to the organisation. One completed the survey over the phone, and several gave us alternative contact details. A further two organisations told us that this survey was not appropriate for them as they were purely for educational and training purposes. Of the 30 organisations contacted, we received completed surveys from 13 organisations (43% response).

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9.2 ANALYSIS OF RESPONSES

9.2.1 Overview

The survey focused on four areas:

Knowledge of the parallel systems for patients seeking planned healthcare abroad; Receipt of requests for guidance, advice or information from members of the public

about receipt of healthcare funded by the NHS or privately organised and funded; Participation in discussions with healthcare commissioners or providers; The role of their organisation in offering advice on the receipt of healthcare abroad.

9.2.2 Analysis of responses

Knowledge of systems and processes

Six organisations (46%) were aware of systems for the authorisation of healthcare under 1408/71 (E112), and the same six were aware of systems for authorisation under article 56.Three (23%) organisations were aware of the proposed new directive from the EU on cross border health care. One of the respondents told us “[I was a] key stakeholder so have been invited to give views/attend events on the issue”.

Requests for information

Only one organisation has received any requests for guidance, advice or information from members of the general public about receipt of healthcare abroad funded by the NHS. The organisation told us “[we] responded positively”. However, six organisations (46%) told us that they had received requests for guidance, advice or information about receipt of healthcare which would be privately organised and delivered.

Comments from respondents, in response to this question, include:

“[Name of organisation] does receive enquiries about private cosmetic surgery abroad. We have published a patient information sheet which can be accessed by the public from [our] website. It summarises the answers to questions posed by members of the public and cautions which they need to bear in mind if they travel abroad for private cosmetic surgery”.

“Breast augmentation is often cheaper abroad. My organisation will sometimes be asked advice by a member of the public prior to going abroad, at which point my organisation will advise not to undergo surgery abroad. More often than not, [we] hear from members of the public after they have undergone surgery abroad when they are seeking aftercare advice or assistance when things go wrong”

“Patients often request info on choosing private healthcare abroad”

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“Requests for information include: why is dental treatment so much cheaper abroad? Or looking for a recommendation, which we are unable to provide”.

Participation in discussions

None of the organisations had participated in discussions with health care commissioners or providers around the issue of health care abroad, including PCTs, SHAs, NHS healthcare providers, private healthcare providers and intermediary organisations. One organisation had sought guidance from the DH in respect of patients who had experienced problems following cosmetic surgery abroad, for example the roles and responsibilities of the NHS once these patients return to the UK.

Role of organisations

Ten organisations (77%) believed that offering advice around seeking healthcare abroad is part of their role as a patient association or professional body. One explicitly commented that this would be part of their member support remit, and other that concentration on this would be outside their remit.

Eleven organisations offered further comments on their role, including:

“Here to provide support and advice. As part of their choice is to go abroad, then we feel we should give as much info to make this informed choice”;

“If asked about this we would do our best to find out what the regulations were”;

“Only for the transfer of existing patient ongoing treatment NOT as seeking an alternative access to new treatment”;

“Patients must be aware of the risks and areas for consideration of entering into healthcare arrangement overseas”;

“The [organisation] aims to provide as much advice as possible for any woman with or considering breast implants. It is my opinion that opting for surgery abroad for the sake of saving money is not ideal”;

“We aim to provide answers to whatever questions patients ask”;

“We can discuss pro's and con's of receiving treatment abroad and any other dental issue that may arise from this. We already do this with private dental treatment abroad”;

“We do not offer advice on medical issues we would, in the case of medical conditions signpost to specialist support organisations or professional bodies, and individuals GP”;

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“We provide information for patients so they are better able to be aware of the potential pitfalls if something adverse occurs, once they have returned to the UK and do not therefore have access to the surgeon that performed their private cosmetic operation”.

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Section 10:Conclusions and Recommendations

Key Findings

Current demand for planned overseas healthcare funded by the NHS is very low. Whilst a 60%of the British public do not appear to have any intrinsic barrier to receiving treatment abroad, revealed preference from patient behaviour suggests that the desire to be treated close to home in a system that is understood outweighs any perceived benefit from treatment overseas.

This lack of demand could be due to a lack of knowledge of rights EU citizens have to treatment abroad, especially to routine treatment where people may be more willing and indeed already be receiving treatment in the EU. The new Directive may raise the awareness in the population of their rights and so potentially raise demand. An increase in demand could also arise if waiting times for treatment increase in the future as people indicate this as the main issue that would drive them to seek treatment abroad.

Processes adopted within PCTs to assess cases focus on the use of exceptions panels. These processes are the same as those for any patient seeking funding for treatment not ordinarily provided by the PCT. These processes are resource intensive and time consuming and as they are exceptions panels some of the factors considered in making decisions should not be considered for requests for funding for treatment in the EU.

Even with only a small increase in demand, especially for routine treatment, the current resource intensive processes adopted to assess requests for funding, would struggle to cope.

Commissioning in this area is clearly found complex and challenging locally. Processes are resource intensive. Whether through inadequate guidance or poor interpretation of guidance, commissioners are applying criteria in the decision making process that have no basis in legislation or case law. The potential consequences of making a wrong decision are significant. Current low demand for overseas healthcare makes this a lower priority area locally than it is nationally. In our opinion, these facts points to this being an area that should be considered for national rather than local commissioning.

Looking at the evidence in its totality, it provides clear and consistent messages about the demand for overseas healthcare and processes in place locally and nationally when NHS funding for overseas treatment is requested.

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10.1 DEMAND

The research provided evidence that current demand for overseas healthcare for treatment that could be funded under the NHS is insignificant when compared to NHS funded treatment within the UK. Patients requesting and/or receiving funding through E112 or Article 56 are very small across PCTs and Health Boards – especially if patients travelling for maternity care are excluded. In some areas, local commissioners have not in the recent past funded any treatment within the EU or received any requests for funding.

The public survey confirmed this finding of low current demand, providing further evidence that a tiny proportion of the population have sought NHS funding for pre-planned healthcare in the EU. Around 5% of the sample said that they had considered going abroad for healthcare however and over 60% stated that they would consider going abroad, with the majority of these people stating that they would go abroad if waiting times were too long.

These findings are reinforced by the findings from the focus groups, where waiting times were a driver to seek healthcare abroad.

Whilst we cannot provide strong evidence on the scale of any future demand for planned treatment in the EU, the evidence found does suggest that there is a willingness to consider going abroad in a majority of the population – although a majority of the population would also not know where to go for information if they were considering overseas treatment. Further, the mystery shopping indicated that PCTs do not necessarily have the processes or knowledge to deal with queries, and may not be offering helpful or accurate advice. Taken as a whole, the lack of information could be a barrier to patient mobility.

It is conceivable that this latent demand will surface into actual demand when the new Directive comes into force and people are, in theory, more easily able to exercise their rights. Given the low level of demand currently it is in the opinion of the researchers more likely that the findings of the focus groups and public survey actually show that there is not a significant cultural barrier for a majority of people to receiving treatment abroad. If the time should come for these same people to need an operation or treatment for a serious condition, patients already show by revealed preference that they would like that treatment in a system they understand and close to home and family – just as those foreign nationals seeking E112s for treatment in their own countries. Only when a specific treatment is unavailable or a perceived better pathway or quality of treatment is on offer in the EU do British nationals seem to seek or be recommended for treatment overseas.

Restating this point slightly differently, the lack of translation of potential into current demand for overseas treatment could be that supply of healthcare in the UK meets current demand and so people do not need to go overseas. Given the change in emphasis away from targets around waiting times, it may be that if this results in waiting times increasing or a significant return to waiting lists then in effect supply will no long meet demand and more patients may seek treatment abroad. This is especially pertinent given the primary reason people in focus groups and the survey gave for seeking healthcare abroad was waiting times.

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Despite this, the new Directive may still increase the demand for overseas treatment amongst people with no intrinsic barrier to treatment outside the UK, perhaps even for routine treatment such as dentistry although we found no evidence of this.

The reality is however that current demand for treatment may also be being suppressed by current processes to assess requests by local commissioners. Processes that themselves would appear to be completely unsuitable for even small increases in demand.

10.2 PROCESSES

Local health commissioners could fall along a continuum of access to overseas healthcare, from a policy of not allowing overseas treatment to a fully supportive policy with processes that assess each case fairly within existing legislation. Evidence from the research would strongly suggest that there are many – probably a majority – of local commissioners who are at the wrong end of that continuum, and possibly no local commissioner completely at the right end. If anything, the national picture is likely to be worse than that found through our evidence gathering as it is likely that those that did not engage with the research failed to do so either because this is a very low priority area, there is no one locally who is responsible to assess requests or both.

One local commissioner refusing funding without consideration of the case is one too many, but our evidence points to several taking this stance with, in our opinion, a high likelihood of other commissioners also adopting this position. Many local commissioners that would in theory assess a request have implicit barriers to patients receiving funding in the form of poor communication and provision of information and advice that is inaccurate. This is strongly evidenced by the mystery shopper exercise.

In our opinion, the evidence suggests that the high proportion of local commissioners at the wrong end of the continuum is due to the low number of cases and also, at least in some areas, to an underlying implicit belief that patients should not be allowed to go overseas for treatment with NHS funding.

The case studies in particular showed that there are some local commissioners who are positive about funding overseas treatment and have tried to make information available and put in processes to fairly assess cases. However, all evidence points to a coherent picture of requests for overseas treatment being assessed as requests for exceptional funding with the resultant processes that this entails. This process treats patients requesting overseas treatment as making an exceptional request that would not ordinarily be funded which is the antithesis of someone making a request to exercise a right under European law.

Nevertheless, there are clearly some local commissioners who try to assess each case solely on its merits. However, it is worrying that some if not all areas are not assessing cases within an appropriate framework. Undue delay is not always focussed on the patient but rather on current waiting times. There is some confusion as to whether funding should be based on what the NHS would fund or what is funded by a PCT. There is at least one

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case where the decision is based in part on whether the budget for non-contracted services has been exhausted in that financial year. The exceptional panel system also means that decisions can take a substantial amount of time to reach, in large part to establish whether a particular request reflects the patient pathway in a particular local area.

Evidence from the E112 analysis, case studies and commissioners’ survey also shows a disparity in the type of claims that will be considered. For example, some commissioners view a patient wanting to be close to their families during treatment to be an acceptable reason to fund treatment abroad whereas in other areas this would not influence the decision with the focus solely on clinical need.

Taking all of the above into account, the access a patient has to treatment in the EU is more greatly influenced by where they live in the UK rather than their own specific healthcare needs and choices.

There are potentially serious legal implications for failing to properly assess a patients’ request for planned healthcare within the EU, with the ECJ already criticising NHS processes in this area. Given this, the evidence found that there are significant and profound shortfalls and a postcode lottery in the quality and accuracy of NHS advice and processes delivered locally to patients to access overseas treatment within the EU is of serious concern to the Department of Health.

There is limited evidence that preparations are being made for the introduction of the new directive and strong evidence that many local commissioners are not even aware that a new directive is coming. Whilst the commissioners’ survey found that many PCTs and Health Boards stated that they were looking at future demand for overseas care, this was not found in the case studies. In any case, the examples given in the survey of activities to predict future demand seemed to focus on looking at previous demand.

The current system of using panels to assess a request is in our opinion unsuitable should numbers increase with the introduction of the new directive - which our research has not discounted. Also, whilst it is understandable that local commissioners seek to establish whether a patient pathway overseas exactly matches that locally, it is difficult to see how this could be easily done with retrospective claims - a point recognised several of the case study sites.

Concerns were raised continually during the case studies about governance issues arising from allowing people to be treated abroad. This is an area where additional guidance may be required, especially as under the new directive more patients may choose to go abroad without seeking prior authorisation.

The clear message that is consistent throughout the research is that this is an area of commissioning that PCTs find complex and challenging. This complexity has meant that some PCTs are applying criteria by which they make decisions to fund that do not seem to have any basis in current legislation or case law. The majority if not all PCTs see this as being a low priority area. Knowledge of processes and criteria for NHS funding of treatment abroad does not appear widely known by staff within individual PCTs.

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Given the complexity of the area, the difficulty commissioners have correctly interpreting guidance and applying criteria and the potential consequences of failing to allow someone treatment abroad when they had a clear right for funding under legislation and case law, it is our opinion that this is an area of commissioning that would be more appropriately handled nationally. This recommendation holds if numbers stay low or increase with the new Directive. With low numbers it would seem a more efficient use of resources than to make each local commissioner have their own set of processes to decide on requests. With higher numbers, there is a higher likelihood that one decision will be challenged and found to be incorrect.

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Appendix A

Detailed costs of E112s

Condition TreatmentCost (if

provided)Cancer Follow up consultation 5000Very severe epilepsy 30 day neuro-rehabilitation programme 14445Gall bladder thickening and gall stones Cholecysectomy 2500Severe epilepsy with complex partial and secondary generalised seizures EEG telemetry and 2 SPECT scans 4000Heart transplant Annual check up 5000

Cancer6 month follow up to include CT scans, blood tests and urine tests 5000

Orthopaedic Knee replacement 15000

Neurodenocrine pancreatic tumoursTests relating to neurodenocrine pancreatic tumours 5000

Follow up treatment, surgery and medication relating to a Koch Pouch 15000

CancerBlood tests, endoscopy, consultant appointment 28000

Orthotic requirements Casting, fitting of callipers 5000Episodic symptomatic atrial fibrillation Atrial Fibrillation 5000

Gender realignment Adjustment to erectile and testicular prosthesis 2215Plastic surgery Inpatient appointment - surgery 9000Hemi-sacroagenisis with hem pelvic retroversion and previous failed procedures Second stage of Pelvic reconstruction 15000Multi focal epilepsy Gamma knife treatment 6064Pain following surgery on broken foot and heel

Surgery to foot and heel, physiotherapy, handling of scar and dressing. 3613

Removal of an Ilzarov Method 15000Chondrosarcoma at the base of the skull Proton radiotherapy 28000

Gender realignmentUreothrotomy/ureothroplasty for urethral stricture 50000

Knee surgery 9000Chordoma of the clivus Proton therapy 28000 Neurosurgery 15000Breast cancer Breast cancer treatment 15000

Y O R K

Health Economics

C O N S O R T I U M

Vein of galen malformation with marcocephaly Endovascular embolisation 6000

Fracture of tibia and radiusRemoval of metalwork in tibia and radius following operation in 2007 15000

Epilepsy Ictal SPECT procedure 4000Embryonal Rhabdomyosarcoma pelvis/vagina Brachytherapy 28000

Low rectal adenocarcinoma

Assessment. Exentoration. Removal of tumour mass, sacrum, prostate, seminal vesicles and possible removal of urinary bladder. Intra-operative radiotherapy 24000

Hereditary haemorrhagic telangiectasia causing TIAs and cerebral AVMs Anaesthetist consultation prior to embolisation 5000Lymphoma Treatment of lymphoma 28000 Multiple spinal osteotomies 50000Stage III B nodular sclerosing Hodgkin's disease Chemotherapy 28000Acute gender dysmorphia Phalloplasty and a Glansplasty 50000Feeding tube dependency Tube weaning 8650Heart disease All treatment relating to heart transplant 44000Primary malignancy of the brain Consultation 5000

Cleft Lip and palette, right facial nerve palsy, right hypoplastic left ear, possible CHARGE syndrome

Any treatment relating to feeding and breathing difficulties 16500

Breast cancer leading to Hodgkin’s Disease

Specific care relating to cancer and palliative end of life care 28000

Pudendal neuralgia Surgical decompression of the pudential nerve 15000Severe intractable MR negative frontal lobe epilepsy Ictal SPECT scan 4500Advanced degeneration of hip Short stem total hip replacement 15000Intractable epilepsy Ictal SPECT scan 4500 Therapeutic appliances 394Crohn's Disease Laparotomy and revision of Koch pouch 50000

Bilateral sporadic retinoblastomaTreatment relating to Bilateral sporadic retinoblastoma 1543

Tube feeding dependencyProgramme for the prevention and treatment of tube dependency in infancy and early childhood 50000

Surgery 28000Malignant large b-cell non Hodgkin’s lymphoma Chemotherapy 6253Osteoarthritic left knee. Tricompartmental OA. Total knee replacement with titanium 10000

i

Extensive acute intracranial haemorrhage following RTA in UK Nuerorehabilitation 5000Very severe refractory focal epilepsy SPECT scan and inpatient management 4000Long term feeding tube dependency Tube weaning at psychosomatic unit 15038Cancer Photon therapy 28000

Ankle surgery - Retinaculum reconstruction, relocation and debridement of peroneal tendons 5000

Proximal femoral focal deficiencyAlbizzia nail lengthening and preoperative investigations 21451

Cancer Simulation for proton treatment 28000Incompletely excised malignant melanoma.

Surgery - excision of scalp, reconstruction and skin grafting 28000

Clival chordoma Needs further treatment for residual treatment 28000Breast cancer Surgery and adjuvant treatments 28000Severe refractory epilepsy SPECT plus inpatient care 4000

Colon cancerScan and Capox chemotherapy. Anterior resection. 28000

Cancer Proton beam therapy 28000

Llandau Kleffner (extreme epilepsy)Magnetoencephalography (MEG) and MRI brain scan under GA 3000

£1,083,666

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